Podcast appearances and mentions of Sharon Jones

Doggziller and Jellphonic popped thru the show this ep! We were still buzzing from Friday's Circling Sun show at the Pitt St Methodist Churc, so we had to kick off with their "Bliss Part 2" before spinning a couple for the birthday girl Linda Clifford dropping a couple from her late-70s RSO Records disco nuggets "Don't Give It Up" and "Runaway Love". From there things got properly funky: Bacao Rhythm & Steel Band's steel-pan reading of Mtume's "Juicy Fruit" (the B-side 45 on Big Crown, 2022), Bobby Oroza doing his Finnish-Texan soul thing on "I Got Love," and the Terea deep cut "Pretty Bird." The boogie continuum kept things moving through The Deele, O'Bryan, and a touch of Tatsuro Yamashita's 1977 City Pop gem "Paper Doll," before Evelyn Champagne King's "Shake Down," Dynasty's "Check It Out," and The Time's "Get It Up" pushed the tempo right up. The second half ranged wide without losing the thread. Leenalchi's "Here Comes That Crow" - the Seoul seven-piece's just-dropped Luaka Bop debut, a chopped pansori tale rerouted through bass-heavy psych-funk - sat comfortably alongside Daktaris' raw Afrobeat ("Eltsuhg Ibal Lasiti" from their Soul Explosion LP from the Daptone studio) and a run of West African gold: Zeal Onyia's Nigerian highlife, Ebo Taylor & Pat Thomas' "Yes Indeed" (originally recorded in Togo for the 1981 Abotar LP Super Sounds Namba), and Julian Y Su Combo's Afro-Cuban "Enyere Kumbara." Sharon Jones's "What If We All Stopped Paying Taxes," Trio Mocotó's samba-funk "Chamego De Ine," and (birthday boy) Marcus Miller's "I Could Give You More". Heatwave's "Too Hot To Handle" clocked 50 years this month, so you know we had to give "Ain't No Half Steppin" some airtime. Press the button.

durée : 00:59:28 - par : Nathalie Piolé -

When people think of midwives, they often think about pregnancy and birth, but the reality of modern midwifery is far broader.  In this episode of Behind the Genes, our guests explore the many different roles midwives play across healthcare, from clinical care and safety improvement to research and genomics.  The conversation looks at how midwives are helping shape the future of maternity care through research, supporting families to make informed decisions about genomic testing, and contributing to studies like the Generation Study.  Our host, Sharon Jones is joined by:  Katie Handley - maternal and child health clinical lead for the Generation Study,  Fiona Smith - research midwife for the Generation Study at Rosie Hospital in Cambridgeshire  Jess Fletcher - safety and quality midwife at the Rosie Hospital and a participant on the Generation Study  You can find out more about the Generation Study via the study's official website.   “ The more brave we are as midwives, and the more that we're willing to be curious about what we can do to improve our care, the better we're going to be at our profession. All midwives want to do is to provide safe, effective care that is what is in the best interest of that woman. We are advocates for women and for their families.” You can download the transcript or read it below. [00:00:00] Sharon Jones: Welcome to Behind the Genes. How is genomics changing midwifery, and what role are midwives playing in shaping the future of genomic healthcare? Also, do midwives just deliver babies, or is their role much broader than many people realise? [00:00:16] My name is Sharon Jones, and in this podcast we cover everything from cutting-edge research to real life stories in genomic healthcare. [00:00:23] Joining me today are Katie Handley, Fiona Smith, and Jess Fletcher. Katie is Maternal and Child Health Clinical Lead for the Generation Study, Fiona is a research midwife for the Generation Study at Rosie Hospital in Cambridgeshire, and Jess is a safety and quality midwife at the Rosie Hospital, and a participant on the Generation Study. [00:00:42] Together, we'll be exploring how midwifery's evolving, where research fits into clinical practice, and what genomics mean for maternity care now and in the future. We kicked off this one by asking Katie what roles midwives play day to day. [00:00:56] Kate Handley: I think when people think of midwives, they think of helping a lady to have a baby. [00:01:01] We're there for the birth, we're there to catch the baby, but it is so, so much more than that. We're there from the moment a woman becomes pregnant or even before that. We can help with prenatal, uh, preconception care. We're there all the way through the pregnancy, for the birth, and then afterwards as well, we'll look after the lady, her family, until, until we hand the baby and, and her over to the health visitor or to whoever's next in her care pathway. [00:01:25] But that's just looking at clinical midwives for the... that are involved directly in that particular pregnancy. There's midwives doing all sorts of other roles. I think I'm a really good example of that. So I am a clinic- I was a clinical midwife. I am a registered midwife, but now I work as a clinical lead, so I'm using my midwifery background and my midwifery skills in a research environment, but to help people who don't know as much about midwifery to implement a research study, and how we can make a research study real in a clinical environment. [00:01:59] So that's one example, but there are so many other things, and we have midwives doing screening roles and lots and lots of midwives working in research as well. [00:02:08] Sharon Jones: That's interesting. I've got a couple of friends who are midwives, and I would never have known, like, the extent and scope of their role. [00:02:14] Kate Handley: Yeah, I think people might be surprised to hear that you can be a midwife but never actually even see a pregnant person. So we have midwives that are academics, for example, or midwives that are lecturing at universities, midwives that are working behind the scenes in risk and governance and looking after the safety aspect. [00:02:30] Sharon Jones: That's amazing. I would never have known that. So Fiona, how has your role as a midwife changed over the years? Because you've gone through quite a bit of a transition, haven't you? [00:02:39] Fiona Smith: I have. Before I even became a midwife, I was, I was nursing. That nursing pathway was not academic, as we now have to undertake academic training to become a midwife. [00:02:50] So we... the training was very different. It was very hospital-based, and this is what you do, this is what we do. You would do some observation. You'd have a go. You'd get signed off. That really was my nursing background, and then when I started to explore midwifery, and it was much more academic, and that I was going to do the university pathway, I doubted that that would be something that I could actually even contemplate. [00:03:15] Moving forward 20 years, here I am. I've had various roles: community midwife, running birth centres, and then more recently, the last six years, joining a university hospital which has a, a, a big emphasis on research and academic training, brought in lots of students, medical students, and others. I saw some research that was happening at the hospital and became quite curious, took the plunge, and the last two years I've been working as a research midwife, which was a real surprise to me to find that this is where I am, and to actually be working on a genomic study is an even bigger surprise. [00:03:57] If you'd asked me 20 years ago that this is where I'd be, I'd probably have laughed and said, "No, that's not something that I could even be contemplating." [00:04:07] Sharon Jones: That's fascinating. It's fascinating, the journey you've been on and how midwifery and nursing training has evolved more broadly. So Jess, how does that compare with your own journey in midwifery? [00:04:19] Jess Fletcher: Similarly, actually, like off the back of what Katie and Fiona are saying, you do kind of go into midwifery thinking that your career is going to very much look like providing labour care and catching babies, which is a wonderful part of the job. And that is very much my background, is that I have been, like, a labour and delivery midwife, usually on the birth centre or in the community doing home birth. [00:04:43] So, and never in my wildest dreams did I think that I would pivot and go into something specialist. I think you k- ... Well, in my case, certainly, I kind of fell into it, quite literally, uh, because I broke my ankle and then had- ... to work from home for quite some time. I was offered to be off sick, and I was working at a new trust, and I kind of wanted to, so to speak, keep my foot in the door. [00:05:05] And I said, "Oh, I, there must be something I can do from home." And they set me up to do some auditing, which quite frankly, a few years prior I would've ... Yeah, you couldn't have paid me all the money in the world to do auditing. And then, lo and behold, I found it so fascinating, not just the process, but kind of seeing how that then would kind of implement us in clinical practice. [00:05:28] And now I'm a safety and quality improvement midwife. My office is on a birth centre though, so it does mean that I still very much work clinically. So yeah, so a similar story. [00:05:38] We're such a highly skilled profession that we can apply it in so many different ways. And now of course, I'm on maternity leave with my third baby. [00:05:46] Sharon Jones: Congratulations. [00:05:47] Jess Fletcher: And so taking a little, a little break, but really lovely to talk about it all today actually. [00:05:52] Sharon Jones: Yeah. Thank you. Thank you for sharing that. [00:05:53] So as mentioned, alongside clinical care, midwives are, are playing this increasingly important role in research. [00:06:00] And though it's something that people might not necessarily realise and they might not associate with the profession, I'd love to explore what that actually means in practice and how midwives have become involved in this space. So Katie, where does research fit in with midwifery today, and how do midwives get involved in that space, and is that something that all midwives are engaged with? [00:06:21] Or is it a more specialist kind of pathway? [00:06:23] Kate Handley: It can be a specialist pathway, but I think what's really, really important to realise here is that every single midwife is involved in, in research, whether they realise it or not, or midwifery care, has got to be evidence-based. Everything we do is evidence-based, um, because that's what keeps midwifery care as safe as it possibly can be, and we can only get that evidence base from doing research. [00:06:46] So even if midwives aren't taking part in a research study themselves, if they're not, you know, getting consent from people to do research studies, the care that they are giving comes from research that has been done in some space. Even if that's not within the UK, it's research that has been done. So research is incredibly important. [00:07:03] That's how we evolve, um, our care, how we evolve our pathways, evolve our guidelines is through that, through that research. [00:07:11] Sharon Jones: So can you talk to the audience about what is a research midwife versus a clinical midwife? [00:07:16] Kate Handley: So a clinical midwife generally is somebody that will have hands-on care during the antenatal and intrapartum or, or postnatal period. [00:07:24] A research midwife, often that will be someone who still works on a ward, in a hospital, but is helping to put research into place. So that may be running a study and taking consent from women to take to be part of that study, and then doing whatever the study needs. Or it can be actually conducting their own research, it can be writing, it can be an academic form of, of midwifery as well. [00:07:49] It's really, really important, and it really depends on the hospital and on the trust how much that research is incorporated into the clinical care, and sometimes it can be quite separate. But both very, very important. And the Royal College of Midwives are really, really trying to work on making research part of general midwifery care. [00:08:09] It's something that undergraduates need to do now as part of their, their degree, which all midwives have to do a degree to become a midwife. They have to do research. They have to be involved in research. Midwives in their first year of being qualified should still be having a research role and looking at how research can broaden their clinical skills, and it's something that should be going on throughout their entire career [00:08:32] Sharon Jones: Yeah, that's great. [00:08:33] Fiona, what does a typical day look like in your kind of research-focused role? [00:08:38] Fiona Smith: Firstly, just to say, when I moved from a clinical role into the research role, I thought I was going to miss that kind of adrenaline rush that does come with being a clinical midwife. And so I thought, it-- this is so quiet, it's just a really very different pace. [00:08:54] But actually, there are deadlines and things like that. So yeah, on a daily basis, it is really... it's a really busy day. [00:09:02] So we can be answering our emails and inquiries about research. We're liaising with the clinical team, so I'm involved in a screening study, so we, we need to collect samples. So we go and collect samples, we register those samples. [00:09:19] We're then approaching our patients or ladies that come in to have scans, or they might be in the antenatal ward. We liaise with the community midwives who might have people that want to take part in the study, so we do a lot of communication with the women through that way. [00:09:38] And having the background as a midwife, having that holistic approach has really, really broadened, you know, and really helped support my role as a midwife. Having-- transferring those skills has been incredible. [00:09:53] Sharon Jones: So what kind of studies do midwives support? [00:10:03] Fiona Smith: So apart from the genomic studies, uh, because a, a lot of genetic-based studies are going on within our trust. Where they're looking at trying to understand why things happen and see if there's a genomic h- component that might be attributed to conditions. We've got observational studies where we use lots of questionnaires to ask patients about their experiences. We've got interventional studies, so that could be testing a new drug or an interventions, just testing something that might work and, and might build that into that evidence base to - [00:10:32] You know, to put into practice. I'm really surprised at the portfolio of, of studies that is available. So they could be, um, not just maternity-based, but the obviously obstetric-based and studies, and we do a lot of gynae studies as well, so we work alongside the gynecologists. [00:10:51] Sharon Jones: So Katie, genomics is becoming more visible in healthcare. How is that showing up in maternity care more broadly? [00:10:58] Kate Handley: So I think what's really important to note here is that genomics has always been really important in, um, maternity care. [00:11:04] It's just that midwives potentially didn't know that they were doing it. Um, so from the very moment that we book a pregnancy, so when, when a woman has her first appointment at, you know, 8-10 weeks, we're already using genomics to plan her, her care. So we're asking about family history. We're asking about a predisposition to, um, heart disease, for example, or heart conditions or diabetes, or things that we will then use to plan a, a pregnancy going forwards. [00:11:30] We're looking at, yeah, family history. Uh, we're doing screening, antenatal screening, which, uh, some of the tests there are genomic based. And then after the 20-week scan, for example, if we find some sorts of congenital abnormalities, we can use genomic testing then to find out what, what is potentially wrong with the baby and what we can do about it. [00:11:50] And then moving forward throughout that pregnancy, genomics is also really important in bereavement care. So if there's a history of multiple miscarriages, for example, or if a baby is stillborn, we can use genomic testing to find out any reasons for that and to hopefully improve, um, care for that woman going forwards as well. [00:12:08] The big thing that's going on at the moment for genomics in maternity and midwifery is, uh, newborn screening At the moment, our newborn screening is looking for, uh, nine or 10 different conditions, um, which are very rare, but do have some treatment if they are caught early. What we're doing with whole genome sequencing, where genomic testing is looking to see whether we can find a much larger range of conditions much earlier in the baby's life to see if we can improve outcomes for those babies. [00:12:38] And so that's a huge role of genetics. Yeah, absolutely. [00:12:41] Sharon Jones: So Fiona, how confident do midwives generally feel about discussing genomics with families, even though Katie's just said it's not sort of nothing new and it's always sort of been there, maybe badged differently. How do you feel that midwives feel about talking about it when they are talking to families? [00:12:59] Fiona Smith: They probably don't feel, you know, very confident speaking about it. And I definitely wouldn't have been able to speak confidently in a comm- as a community midwife, uh role. But what, what is great about the hospital is that we know that they're where to refer to. So we've got the fetal medicine midwives who are available at any point to talk us through what to say to women or to help us, and the screening team are really useful and are on hand to, again, help us navigate that and what to, you know, what to say to parents. [00:13:36] We've got a really good patient record system as well, so we should, we, you know, the notes are very accurate. We should be able to, uh, follow through from what the parents have been told already, what their journey looks like. So although we're not 100% confident, but I think the students coming through, they're going to have res- acquire a lot more knowledge. [00:13:59] And also our midwifery standards imply that genomics should be part of that everyday conversation that midwives are having. So although it isn't something that's familiar within our parlance. I think going forward, I think it definitely will become much more mainstay, if you like, just- [00:14:20] something that we will be naturally talking about because you know, let's face it, genomics is here. I want to say being part of the Generation Study team, because I'm quite visible and everybody seems to know me because I've, I've transitioned from one role to the other, you know, we are visible. I'm stopped quite a lot, and midwives are asking the questions and, "Well, why?" [00:14:43] You know, "Why is it important?" Just even to be able to talk about, you know, that we've, we're building up a database, data that's going to be used for future reference. Being able to have those conversations with, with the midwives now will really help that confidence. It's something that I didn't think I'd ever have a conversation with. [00:15:02] I don't have very deep conversations, but I know where there are people if I do need to get those answers. [00:15:09] Kate Handley: No, um, I think going with what, what Fiona says, I think it's really interesting that pregnancies generally now are becoming a lot more complex. Um, we're seeing a lot more high-risk pregnancies, and I think that we will find that, that women and their families, their knowledge of genomics is probably going to increase as well because we're going to see genomic testing more widely in, in healthcare, and that's going to have to then flow through into maternity and into midwifery knowledge because women are coming in with more of a baseline knowledge as well. [00:15:40] And when we're dealing with more complex pregnancies and more high-risk pregnancies, genomics is a huge part of that. We, you know- Mm ... because we're going to be looking at things like pharmacogenetics, where we can see what kind of treatments are going to be best for these women and how that can then impact on their pregnancies. [00:15:56] I think epigenetics is becoming more and more talked about and more interesting in maternity, you know, and it's really important that midwives are aware that we've been speaking for years about the impact of smoking, alcohol, all of the outside factors on a pregnancy. But when we actually consider that from a genetic point of view, and that these genetic changes could potentially then be feeding down through generations, it brings a whole new level to the, to that aspect of maternity that, that midwives do need to know about. [00:16:27] So I, I think Fiona's right. I think that there is a lack of confidence when you hear the word genomics, but as soon as you explain what genomics actually means, then that confidence can be boosted. And I think that as we go forwards, there's so much work being done in the training and education systems for universities, for midwives that are already practicing. [00:16:53] We're really trying to, to improve that confidence and competence. Within the Generation Study, that's something that we're working really, really hard on, is to make sure that we're giving all the really appropriate training to the midwives that are involved in it, and that's not just the research teams that are, uh, that are asking consent from the participants, but that's for the wider team as well to, to help the, the midwives who are taking samples, for example, understand why they need to take that particular blood sample, the importance of taking it at the time, and what that means for the family and how that can impact on, on the future. [00:17:26] Sharon Jones: So it's kind of a whole literacy raising across the piece, isn't it? Just to sort of go back to a couple of things you said there, for those who might not know who are listening, would you mind just explaining about, um, pharmacogenomics and epigenetics? Because I just wanted to make sure that we put it across for everyone who might not know those terms. [00:17:44] Katie Handley: So epigenetics, for example, that's looking at how environmental factors can influence gene expression. So how the impact of something on the outside can impact what's going on in the inside. And we do know now that, that environmental factors can change the way that your genes in your body work. So that can not only impact the individual, those gene changes can be passed down through to the next generations as well. [00:18:12] And we know that this can happen across the placenta, so what a mum does in her pregnancy can then change the gene expression of the baby as well. And then we've got pharmacogenetics, which is looking at how certain drugs and certain treatments can be individualised for personal care. So looking at a person's genome, looking at the way their individual genes all work together, and then seeing how specific drugs, specific treatments can be used for that individual rather than as a population level. [00:18:43] Sharon Jones: That's really helpful. Thank you. So Jess, did being a participant on the Generation study change how you approach conversations as a midwife? 'Cause you're kind of like in both camps, which is a quite rare and interesting position to be in. [00:18:58] Jess Fletcher: Yeah, it's been a really amazing insight actually. Um, it definitely will, and I think this will kind of, uh, piggyback off of what, uh, Fiona was, and Katie was saying about how confident are midwives when, when they're counselling for studies. [00:19:10] So, you know, I'm, I'm particularly passionate about, and I mean mostly all midwives are, but I'm very passionate about making sure, ensuring that the people that we're providing care for are making truly fully informed decisions. Like very informed, you know, not, not just signposting, but making sure that they understand, you know, what does this mean for you? [00:19:31] Like what could these results mean for you and your family? Because I think the, I mean, this is a wonderful approach in some ways, but very often we'll be met with people under our care that go, "Yes, of course. Like sign me up for absolutely everything." Like the, the more we know, the better. Mm. And actually, I think it's- Then having that discussion about, well, actually, knowing things can be very complex because it then opens up a lot more questions for you and your family, and I'm not, not suggesting that ignorance is bliss, but actually, you know, really ensuring that they truly understand what this could mean for them and for their babies. [00:20:09] And the positives of that as well, what this could, you know, how this could really optimise your, your child's health throughout their life. And so for me, you know, I've always been very passionate about discussing studies with, with the people that I'm caring for. But it was really amazing actually being on the other side and applying that to me and my family and my baby. [00:20:32] What I talk about this, you know, every day, and actually Fiona's right, they're a very visible team, and it's, and it's amazing because, well, for Fiona, because often if she's on the birth centre and a bell goes, she's often having to get stuck in clinically in emergencies anyway. So you get a little touch of that every now and then, don't you, Fiona? [00:20:49] But it means that they are very accessible. I felt I had a really good understanding, but suddenly it felt very personal. And I can't quite remember how it went, whether Fiona approached me or I approached her, because we see each other so frequently at work. I think that when my pregnancy became, you know, common knowledge, correct me if I'm wrong, Fiona, it was more of a like, [00:21:11] "Oh, here we are again meeting in a corridor. Oh, yay, I can do the study," type of thing. [00:21:16] Fiona Smith: I think you came and sat in my office to do the consent. [00:21:19] Jess Fletcher: And that was a really interesting part for me because, of course, as a midwife, you know, you don't get to see behind the curtain, so to speak, as much as what I got to do as a participant. So I got to come and sit with Fiona in the office with the team. [00:21:33] It was wonderful from the perspective as a pregnant person, but also as a midwife, I've learnt quite a lot, and I think that, of course, I'm not at work, you know, currently, but when I return, um, certainly the way in which I signpost and, and the way that I talk about research and this, and the Generation Study in particular, all of that will still be there. [00:21:54] But I, I do wonder if there's going to be, there's a much deeper understanding on my side And yeah, I think undoubtedly that's probably going to, uh, I will adapt how I then, um, talk to people about the study because I've, you know, had more of an opportunity to delve into, you know, some of the great stories that have come out of it [00:22:15] and some of the real successes that have been shared from the team. I think there was very recently a case where a genetic condition was found, but it was found so early that actually his quality of life is now going to be, you know, really optimal. And I just found the whole story really fascinating. So I suppose it's opened a bit more of a door for me on a personal side and a professional side to read more, and I found it, you know, that much more intriguing, I suppose. [00:22:41] Sharon Jones: Yeah, I suppose it piques that curiosity and also just hearing those good news stories. Yeah, kind of showing how, you know, a family's life has been impacted in such a, sort of the early part instead of having that massive journey of finding out what possibly could be the challenges a child is facing and not knowing, having that result so much early on makes such a difference to, to a family. [00:23:03] Jess Fletcher: Absolutely. And, and also just I think as well, because I work in safety and quality, you know, the, a huge part of my role is looking at patient experience. It's been great to be on the other, I mean, yes, this is third time around, but this was the first time that I had a baby at this current trust that I'm working at. [00:23:18] So, you know, it was really great being on the other side of that and actually seeing how streamlined it was, how the communication between the research team and myself as the pregnant person, how efficient it was that I was receiving various things in the post and through the kind of patient portal that we use. [00:23:36] And then how swift the results were as well. [00:23:39] I mean, that, I'm sure that can vary between participants, but for me, you know, you're so caught up in the, in the newborn weeks that you can almost forget you were part of a study. And then I, and then I got the results through and I went, "Oh my gosh, of course. I mean, what a wonderful thing to participate in." [00:23:54] And the fact that we're still a part of it really until he's 16 years old and beyond, if he consents. So I just think, yeah, it's been a really great experience to participate, but it will undoubtedly change how I then talk about it moving forward because I've had this personal experience. [00:24:11] Sharon Jones: Yeah, yeah. Kind of hearing that seamless experience kind of builds on the trust that, you know, you have in the study and, and, you know, the sort of people behind it essentially, which is, is really important when you're kind of giving your genomic data essentially. [00:24:25] So it's, it's really good to hear that. Yeah. So looking to the future, it's clear that genomics is going to play a growing role in healthcare, so I'm really interested in what that means for midwifery. How might the role evolve, and what does that mean in terms of supporting midwives who need to feel confident in this space? [00:24:43] Kate Handley: I think that genomics is going to have a huge impact on maternity care, and I think it's going to be really great to see how we can really improve the personalised care that we give to individuals that come through the maternity system. We try really hard as midwives to treat every single woman that comes through our care as an individual, to personalise her care plan, and the more information that we've got about somebody, the more information they want to share, the better we can look after them and the better care plan we can actually put in place. [00:25:17] So by using any genomic data that we have, we can really improve that, that care. If whole genome sequencing does become part of newborn screening in the future, we can potentially find these babies every day that we think may have a rare condition, and we can do something to improve their quality of life. [00:25:37] Sharon Jones: Yeah. That's, that's incredible. If the study continues and, and rolls out into healthcare, that will be, um, such an impactful and, like, really game-changing Sort of effect for everyone. [00:25:49] Kate Handley: It will be really impactful and game-changing as long as we do it properly, and I think what Jessica was saying is really, really important about genomics can have huge implications for families and for people. [00:26:00] So it is so important that people understand what they're signing up for in any kind of genomic testing, not just in the Generation study. And because of that, the training that we give to midwives in the future, and I say we, I mean that as universities, as midwives teaching each other, as all education bodies, the information and the education that we give to midwives is so important because the only way that we can ensure that the individual signing up for any kind of genomic testing are giving informed consent is by making sure the people taking that consent are fully informed as well. [00:26:34] As us going forwards, if all midwives can just embrace genomics, everybody will help each other build to a position where we can provide really, really good care. [00:26:44] Jess Fletcher: From the perspective of, yes, a midwife, but also someone that's fairly freshly postnatal, you know, decision-making during a pregnancy is actually really complex. [00:26:53] There's a lot of grey areas, and I think that decision-making, that can be really tough if it's your first experience or if you're suddenly dealing with something in a pregnancy that is more complex than you anticipated, and there's no right or wrong answer, and you're having to make decisions with perhaps not quite all of the information. [00:27:14] I mean, Katie touched on the non-invasive prenatal testing when we are, yes, we're, we're screening in, in early pregnancy for a number of conditions, but the non-invasive prenatal testing, it's not 100%, but it, it gives us a lot more to work with. And I think everyone interprets risk differently, don't they? [00:27:34] So if you're given a one in something chance that your baby might have a condition, it's very, can be really difficult and, and a very emotional process to make decisions around that. What's my next move going to be? So if we have the ability with genomics to actually provide a lot more information and kind of broaden the decision-making process, then - [00:27:59] that can only, I think, be a positive thing, or give them the opportunity to then opt out of any further testing, which is equally as important. [00:28:08] Sharon Jones: Giving you as much agency to choose without pressure and just giving you as much knowledge that you need to make the best decision that you can in that, in that situation. [00:28:17] Jess Fletcher: Yeah, the situation that's right for, for you and for your family, which is going to look different for every family, isn't it? [00:28:23] Kate Handley: And midwives are in such a privileged position because of the amount of time that we potentially spend with a woman and to get to know that woman. We have got the ability to actually explain things in a way that, that woman may be able to understand as well, as long as we've got the knowledge. [00:28:40] So, you know, genomics can be really, really complex. Mm. And it can be really difficult for people to understand, even if we do have all that information. So by using the relationships that we can build with those women, I'm thinking particularly community midwives or people during the labour room that are building these really intense relationships really, really quickly. [00:28:58] We really need to be able to use that to our advantage when it comes to actually information given to, to patients as well, and to women and their families. [00:29:06] Jess Fletcher: We're in a really unique position in our profession because we're very highly skilled at having to explain something quickly and under pressure, and try and capture and provide all of the information possible. [00:29:18] But also we work as part of a multidisciplinary team, so we've got access to a lot of professionals that can provide input and help with educating the patient, but also educating us. So our knowledge is always growing, especially around kind of research and genomics in, in particular. Yes, it's becoming so much more a part of midwifery. [00:29:41] So I think, yeah, I, I feel really lucky that, you know, we're not just in a profession that, it, you know, we do this day to day and that's it. It just feels like that there's always a chance to learn and to grow as a professional, and then impart that on the people that we're caring for [00:29:57] Sharon Jones: So coming to my final question, if you could leave our listeners with one message about midwives and research, what would it be? [00:30:05] Fiona Smith: I'd say even though it does sound like it's a scary subject, I think we need to embrace it. The technology that's there, you know, we've got it. It's here to stay. Yeah, just don't be scared. Be curious and excited. [00:30:22] Jess Fletcher: Yeah, and I, I do think... I, I think midwives in general, I feel like when we qualify, we also qualify with a bit of an inferiority complex, you know? [00:30:30] That we worry about what we don't know, and actually, you're right, Fiona, we really mustn't be scared of this. We, we carry so much knowledge. Our profession is, as we've already spoken about, it's so... It's amazing how much we actually do as midwives and, and how broadly we practice, that actually it's absolutely okay if we're not confident in delivering this information, or we're not confident about, you know, where research is going. [00:30:55] The most important thing is, is, is accessing support so that we can make sure that we are, for ourselves and for the people that we're looking after, we have a- as deep of an understanding as we possibly can. [00:31:06] Sharon Jones: Definitely, and, and talking about sort of multi-skilling and, and being kind of pretty amazing, Jessica, I'm, I'm very impressed with our guest that has joined us on, on your shoulder [00:31:26] Jess Fletcher: The generation study baby! [00:31:28] Sharon Jones: A newborn baby. A Generation Study baby, that you've, uh, done this entire podcast with your baby. [00:31:32] Jess Fletcher: He's done amazingly well, hasn't he? [00:31:35] Sharon Jones: Yeah, he's done very well, and that really does, uh, sort of show the power of your, of your skills, not just a midwife, also as a mum, as we know. [00:31:43] Jess Fletcher: Always a juggle. [00:31:45] Sharon Jones: It certainly is. Katie, did you want to add any more about leaving our listeners with a, a message about midwives and, and research? [00:31:50] Kate Handley: Yeah. I, um... Fiona used the word curious, which I think is, is brilliant. I think if we can all be curious about research, we're already onto a winner. And Jessica said about being brave. The more brave we are as midwives, and the more that we're willing to be curious about what we can do to improve our care, the better we're going to be at our profession. All midwives want to do is to provide safe, effective care that is what is in the best interest of that woman. [00:32:07] We are advocates for women and for their families. We want what they want. But in order to do that, we have to embrace research, along with safeguarding and health and safety, I feel like it needs to be everyone's responsibility. You know, we all have this responsibility to improve care for, for the women that we're looking after, and research is at the heart of that. [00:32:30] And the more research that we can do, that we can be part of and that we can implement, the better that our profession will be and the safer that our women will be. [00:32:39] Sharon Jones: Thank you. Thank you to our guests, Katie, Fiona, and Jessica, and Jessica's newborn baby, for joining me today and sharing your insights into the evolving role of midwives. [00:32:50] It's been fascinating to hear how midwives are not only supporting families day-to-day, but also contributing to research and helping to bring genomic medicine into routine care. If you'd like to hear more like this, please subscribe to Behind the Genes on your favourite podcast app. Thank you for listening. [00:33:06] I've been your host, Sharon Jones. Behind the Genes is produced by Deanna Barac, Florence Cornish, Sophie McLachlan, and Patrick Wallace at Bespoken Media.  

On this episode of Reelin'... The Featured Five Theme is At The Library... Plus, A band that gets their name from a term they found in a TV Guide Magazine... The story behind one of Bob Seger's most well-known songs... The Tubes will give us a deep cut about rich kids in Hollywood with drug problems... Music from a guy who worked in a factory installing toilets on airplanes prior to his big break... New music from Deer Tick and Samantha Fish. Deep cuts from The Black Keys, Sharon Jones, Eric Clapton, John Mayer, Rilo Kiley, Mojo Nixon, Leon Bridges, and more!... For more info on the show, visit reelinwithryan.com

Join us as we explore the profound journey of Sharon Jones, a healer, author, and mental health advocate, who shares her indigenous roots, spiritual practices, and lessons learned from humble beginnings to becoming a beacon of hope and healing. Discover with Maestro Jerry Tello and Sharon Jones how sacred ceremonies, ancestral teachings, and a focus on positive energy can transform lives and communities. Chapters: 00:00 Introduction 03:03 Sharon Jones: A Journey of Healing and Community 06:10 Humble Beginnings: Lessons from Louisiana to California 14:38 The Sacred Circuitry: Spiritual Connections and Healing 15:52 Empowering Others: The Role of Choice in Healing 17:58 Books as Tools for Healing 21:51 Navigating Modern Struggles: Racism and Hopelessness 30:08 Advice for the Next Generation: Embracing Identity and Gifts 33:45 Future Projects: Writing for Children and Beyond Learn more at: https://alabastermomentstransformation.com/ https://healingjourneyalabasterusa.online Social: https://www.facebook.com/SpiritofAlabaster/ https://www.facebook.com/Alabastermoments/ https://www.instagram.com/alabastermoments/  To contact Ms. Jones, email: Alabasterspirit.vision@gmail.com And to learn more about the National Compadres Network, please visit: Website: https://nationalcompadresnetwork.org/ Instagram: https://www.instagram.com/la.cultura.cura/ Facebook: https://www.facebook.com/national.compadres.network Email: HGP@compadresnetwork.org 

In this episode, we celebrate 10 years of the Participant Panel and explore how genomic research is being guided by patient and participant voices.  Made up of people who have consented for their genome, or the genome of their loved one, to be included in the National Genomics Research Library, the Panel plays a vital role in shaping how research is designed, how data is used, and how genomics is communicated. From influencing policy discussions to to advising the Genomics England board, their work helps ensure lived experience is embedded from the very beginning.  Over the past decade, the Panel has driven meaningful change. From advocating for greater transparency and accessibility, to challenging how the genomics community talks about genetic conditions. But beyond the impact, this episode focuses on the people behind the work: their motivations, experiences, and the realities of representing a wider community.  Our host, Sharon Jones is joined by:  Kirsty Irvine – Chair of the Participant Panel and member of the NHS Genomic Medical Service People and Communities Forum  Lisa Beaton - member of the Participant Panel, panel member for the North East and Yorkshire GMSA and research and development for Harrogate Hospital Foundation Trust  Frances Allan – member of the Participant Panel and member of the following:  CRUK Women+s Cancers PPIE at Cambridge MHRA Yellowcard Biobank Northumberland NHS health forum Ovacome Healthforum IMPRESS cancer diagnostic tool study participant  You can find out more about the Participant Panel in our recent Genomics 101 episode which Lisa featured in, titled ‘What is the Participant Panel?', and you can read about their timeline of achievements over the last 10 years.   “One of the things as participants that we're always really keen to get across, particularly to the scientists, is that behind every piece of data is a face and a name”   You can download the transcript, or read it below. Sharon Jones: This time on Behind the Genes, we'll be celebrating the 10th anniversary of the Participant Panel, and we'll discuss how genomic research is being guided by patient and participant voices. The panel is made up of participants whose data is held in the National Genomic Research Library. They help us to put lived experience at the heart of our work. My name is Sharon Jones, and in this podcast we cover everything from cutting-edge research to real-life stories in genomic healthcare. Joining me this time are Kirsty Irvine, chair of the Participant Panel, and Frances Allan and Lisa Beaton, who are also both members. Collectively, they wear many hats for a range of organisations, which are listed in the episode description. As you'll hear, this one is all about people power. So back in 2016, the Participant Panel was in its infancy, with 12 founding members bringing lived experience of rare conditions. The idea was straightforward but radical: that the people whose genomes were being sequenced should have a real say in how the work was done. Over the decade since, the Panel has shaped some significant changes, from pushing for a service that let participants track their own samples, to publishing a language guide that changed how the genomics community talks about genetic conditions and disability. They've navigated the pandemic, welcomed new members and, in 2025, launched their first formal strategy. This year they mark their 10th anniversary, and today we're hearing from some of the people who've been part of that story. So welcome Kirsty, Frances and Lisa. So what was your reason for joining the Participant Panel? And I will ask Frances that. Frances Allan: Hi Sharon. I joined the Panel back in 2023 following a cancer diagnosis, and as part of that investigation I was fortunate enough to have a whole genome sequence performed. And they also asked would I be interested in taking part in a panel who look after this information, and I ticked the box and then thought no more of it. And then a month or so later I heard from the then Chair, Jillian, um, and had a chat about genomics and joined the Panel, and it was a very good decision that I made. Sharon Jones: Did you have any kind of expectations? What were your early thoughts when you kind of accepted? Frances Allan: Not many thoughts. So I was in the middle of my chemotherapy treatment, but one of the things that really stood out: when I signed the consent form, I said, well, of course I would do that. And the clinician consenting me, said, actually, not everybody does. And I thought, well, why would they not want to do that? So I was really interested in finding out about that. I had no idea how influential the Panel was, and that was great to discover as I became part of it. But seeing the breadth of the research and the knowledge already gained, compared to my rudimentary A-level Biology from many, many years ago, gave me incredible hope, um, and really helped me through a very difficult, difficult time. Sharon Jones: Yeah, that's, that's amazing. It's amazing that you could kind of think in that way whilst you were actually going through the treatment itself. I mean, how did you split yourself in that way? Frances Allan: I think it gave me a sense of, of purpose. So at the time, I'd, I'd stopped working to have my treatment and I was a, a vet previously, so I was used to thinking about medical things and problem solving, and it, it filled a, a void in my life. I had no idea I'd be able to contribute to it. I thought, well, I'd learn something from it. But, you know, the, the Panel is managed very well. Kirsty's a fantastic Chair. Everybody gets an opportunity to speak, and the attendance can be in person. And I've done most of them in person. When I was poorly I attended an online meeting, but even that is managed so well that you get a chance to speak up. If you're not feeling well enough, then you can, you can add it to the chat or email. So it's very, very inclusive and a very supportive environment, as well. Sharon Jones: Yeah, it sounds like a, a very safe space to be in. And Lisa, what was your reason for joining the Participant Panel? Lisa Beaton: I think it was sort of one of those, bit of a light bulb moment for me thinking, yeah, I could do that. I'm not quite sure why I felt I was qualified to do that, but my reasoning is slightly different than Frances. So I joined the 100,000 Genomes Project back in 2015 in respect of one of my children who has an undiagnosed, thought to be neuromuscular, syndrome. Um, so myself, my husband and our daughter recruited for genetic sampling, and over the years I've sort of taken a keen interest in all things genetic and genomic related, followed on kind of various social media platform. And I think if memory serves, I saw an announcement or an advert stating, do you want to be part of the Participant Panel, clicked on the link and thought, this is something that really resonates with me. I've served with different hats on different kind of participant groups and speaking events, and it's something I feel really, it's an overused phrase, but I do feel really passionate and strong about it because, you know, we are the people who are the front and centre of this, because it's our genetic information. So I applied, did a bit of a kind of resume of myself, um, then had huge imposter syndrome and thought, oh, that'll be the last I'll ever hear of that. And uh, actually had a really lovely interview with some of the then, uh, members of the Panel and must have said a few of the right things, 'cause here I am, three years down the line. Sharon Jones: That's amazing. Has it lived up to your expectation? How has it, how has it helped you get through what sounds like a really challenging time? Lisa Beaton: It's, it probably sounds wrong to say I, I didn't really have an expectation, but I joined it really just wanting to kind of know more and see if I could find out more details, more information, kind of more genomic discovery, and hope that I could give something back, if that doesn't sound too cringey. I think one of the things I'm always really keen to say is that you don't need to be a geneticist. You don't need to be a scientist. You don't need to kind of have lots of scientific information. And I will confess that the very first meeting I went to, I did come away thinking, I think I probably only understood about one word in three. But three years down line as I say, I'm still here, and it's been good to challenge myself and to explore kind of things that I don't know information about, but also I found that there are areas that I can definitely bring lived experience to and, and hopefully a voice for people like myself and my family. Sharon Jones: Yeah. That's so important. It sounds like you've become a bit of an expert by, uh, experience there. Has your vocabulary improved in the last three years? Do you know more words now? Lisa Beaton: Yes. Uh, I've, I have to remind myself not to use an acronym. It's one of my pet peeves. You know, when you're, you're in a, a meeting and terminology or, or vernacular, that is not necessarily something that people would use day-to-day, and I think lots of you know, you don't, don't have to be genomics or genetics to, um, using acronyms for things. It's something we all need to remind ourselves that just because you know that expression, somebody else doesn't. So it's really important to kind of keep that at a, a lay explanation so that everybody understands it. Um, I think particularly with quite heavy subject matter such as genomics and genetics, there can be a tendency otherwise for people to feel that it's not for them. And of course it is, because it's about our own personal data. Sharon Jones: Yeah, absolutely. And, um, and coming to you, Kirsty, what were your kind of motivations for, for joining the Participant Panel? Kirsty Irvine: Well, it's been quite a long journey for me to find myself on the Participant Panel, so I and my family, we were all consented into the a 100,000 Genomes Project back in 2015. But from that point, I then spent nearly 10 years chairing committees at NHS Digital and then NHS England, focusing on health data access. And I remember talking about the 100,000 Genomes Project at my interviews for those roles. I then went down a different path. And in those roles I was very much wearing my solicitor's hat. So I was thinking about governance and risk and were we complying with the precise wording of the legislation. And then when the chair role came available, I had a number of people sort of forward it to me saying, I think this would suit you. I think this would suit you. And at that stage, I was aware of the Panel because I'd met the fantastic former chair, Jillian. Um, so I'd seen Jillian at various conferences and meetings and things, so I was well aware of what the Panel did. I was well aware of the Panel's standing. It was probably the only participant panel that I was aware of in my work with NHS Digital, NHS England. And then I realised, you know, I wanted to be closer to the people behind the data and I wanted to do something more active. I wanted to bring a bit more of myself. Because when you're chairing a very formal committee, at NHS England, you, you can't talk about the time that you resuscitated your child at home, you know? And on the Panel, you know, my very first meeting, I, I met someone, someone whose child had, you know, been fed with an NG tube for a number of months. You know, I met someone else who had resuscitated their child, you know, and all of a sudden I could bring more of myself to my colleagues and, and find a real community. So for me, joining the participant panel was a way of shifting the perspective, but to also bring that experience with me because I, the roles at NHS England, you know, from a governance perspective, I couldn't continue chairing those, you know, board subcommittees forever. But I didn't want that knowledge to just sort of disappear. So for me, I'm really delighted that I've, what I hope, what I hope is a good fit. I feel it's a good fit. So that, that's been my journey to the Panel. Sharon Jones: Yeah, that's, that's so interesting. And I guess having that space to kind of be yourself, and having understanding because of your lived experience, brings a lot of value to the role that you're doing now in a way that kind of is different when you're in your previous roles of NHS Digital, because you had to be a bit more, kind of stand back from it and, yeah. That's so interesting. So, what has it been like being part of these groups? You know, the ones that you kind of, you're involved in a lot of things, and we'll list them in the, in the web description. And how has it kind of affected your life, essentially, because it's not the kind of average thing that people are involved in. Frances Allan: So it's been an incredible, I think as Lisa alluded to, incredible learning curve. We've learnt so much. But the team at Genomics England are endlessly patient and very skilful at passing that information on. And we have access to the leading researchers, the clinicians that are involved in genomics. And they're happy to take any question. And the questions, however silly, there's no silly question. They're happy to answer that. And so we learn every time we attend a meeting, we have quarterly meetings and that can be in person or online. Um, but we also have regular lunch-and-learns. So if there's somebody we want to speak to or find more about their specialist area, they'll come and have a, a chat with us. And then we have half of it, them chatting to us and half us, us. Us asking them questions and, and challenging them. Um, so it's very, very informative and then learning from each other. And as Kirsty was saying, you know, this is a, a group of people who've, who've dealt with an awful lot of unique situations and they're happy to, to share that and pass on the information. It's a, it's a great place of learning. Sharon Jones: Lisa, would you agree with that? How it been for you? Lisa Beaton: Yeah, I would definitely echo everything that Frances has actually said there, and I think it's a very humbling experience, as well. Ostensibly, we are a, a collection of individuals who have all been brought together, um, purely because of, uh, our genomic interests. And whether that's for our families, you know, as, as parents, as in my case, or in somebody like Frances' case, who's obviously a participant in her, in her own right. And although there are kind of many differences in our stories, there's also a lot of similarities. But I think what's really interesting, very precious, is that the staff at Genomics England, obviously they range from, you know, there, there's so many different kind of areas from the, the comms, the scientists, etc., but everybody is really interested. They want to know your story, who you are, why you are there. There's a real kind of inclusion focus on that. And one of the things as participants that we're always really keen to get across, particularly to the scientists, is that, you know, behind every piece of data is a face and a name. And I think they really make that felt when they're chatting to us. You know, we go in and, and there, there's people who are there from governance sides for how the data is accessed by other parties. There's people there who are the science technicians, etc. There's people who are dealing with the administrative side of things, but every single person that I've encountered wants to know more about you, what you are there for. And that is, is very, very precious. And as Kirsty also alluded to, a lot of us have been through some really quite traumatic experiences. It, it's not my place to speak of others' journeys, but you know, there, there are, uh, bereaved parents and family members among us. And so we are sharing very precious raw material, emotions, experiences, and that is very powerful, as well. And I, I think the Genomics England staff never forget that. They seem to bear that at the forefront of their, their communications with us, always. Um, and certainly Kirsty and Adam and previous chairs, uh, of the panel, that inclusivity was entirely throughout every dealing we had with them. Sharon Jones: It's very humanising and I think that it's humbling for us who work here that that's always at the forefront of our mind, that this is why we kind of get up and go to work every day, because of that human element. And it's not just a data point. There is a whole family, a story, a history, and that's, that's so important to us in the work that we do. Kirsty, did you want to add your point on this as well? Kirsty Irvine: I've probably got two points I wanted to raise. One was just to draw out what Lisa was saying, is that it can be complex being a Panel member, because the story you're bringing often isn't just your own. In my family, we've got a real, we've got a whole range of genetic differences and conditions that, you know, across the extended family. And so when I speak, I'm often drawing on experiences that aren't solely mine to share, and, you know. So I think that's something that for some on the Panel, we're sort of, we're, we're being quite careful to think about what we're saying, and if we're speaking in the public domain, we might be talking about it in more general terms. So that's, you know, but there's not a single right way, and there's room on the Panel, everyone, for the people who can and, and as Lisa talked about, you know, the, the most acute situation is where someone's bereaved, you know. And it's, so everyone's got different, you know, different experiences. But that, that, again, coming back to the positive side of things, one of the biggest things to me about being on the Panel, what it means to me, is being part of a wider community. I mean, one of the other things that, Sharon, I don't know if I can sort of segue onto this about, you know, the opportunities that have arisen? Sharon Jones: Yeah, absolutely. I'd love to hear more about that. Kirsty Irvine: So one thing that really stands out for me was the opportunity to speak directly with, um, Associate Health Minister Ahmed about, and his policy team. So we went to the department, Adam and I went to the Department of Health, and it was about the use of GP data in consented research cohorts. So getting the GP data into the National Genomic Research Library. So even though there's consent, up until now, that GP data, that tranche of really rich data, hasn't, hasn't gone into the NGRL. So I'll use that abbreviation now that I've used it in full. And so what was really unique for me was that I'd seen it from multiple angles because I'm participant in the 100,000 Genomes Project, so I'm a cohort member. I then worked on the consent review for NHS England. I then sat on a, the consent review assessment committee with, you know, a multiparty group. And then, because I was on the panel, I got to see things full circle. I was then invited to, to go and meet with, um, Minister Ahmed and, and advocate for the use of this GP data. And that really matters because something, you know, there's such important information sitting in that GP data and it wasn't a given, it was not a given that the government was going to the direction that allowed that data to go into the NGRL. And so we were able to talk about how we really wanted that data to be used. And now, going forward, you know, something as simple as BMI or for example, if a, if an individual's coded for a neuro, neurodevelopmental condition like autism, sometimes that data actually only sits in the GP health record. It's in primary care only, so it's not necessarily in the hospital records or other records. And so this is really, really valuable data for, for researchers. And so that was something that was a really special experience, just being able to see that come full circle. And I felt like it's a really tangible example of how the participant voices really helped strengthen that conversation, you know, with the DH policy team, you know, and the government ministers. Sharon Jones: Yeah, I mean that's, that's really powerful and it, it just sort of shows how these opportunities can arise from being involved in a participant panel in a way that you wouldn't have necessarily had that power if you hadn't been involved. And you know, obviously you are wearing lots of different hats in that, in that position, Kirsty. And um, it just sort of shows what can be done when you're, unfortunately, you know, you're in this group for a reason and it's not necessarily the, the most cheeriest reasons, but it, you still leverage that opportunity to create something positive, you know, with it. Frances Allan: So we've given all sorts of opportunities and we seek to get involved with as many things as we can to speak and have our voice heard. Um, and one of the things I did last year was, um, do a short presentation to open a stage at the Genomics England Research Summit, which was quite a challenge for me, but I felt very exhilarated having done it. And then a couple of people came up afterwards and just said, oh, thank you for sharing your story. And a researcher who was slightly older than I, so very experienced, been in his field a long, long time, and he said his clinical years were long behind him, and now he researches within a lab. And actually for someone to say, you know, thank you for, for looking, thank you for finding, had a very profound experience on him. And he knew there was a clinical benefit; his research was very clinically led. But he said he hadn't thought about the recipients of those findings. And I pointed out every time you have that chat with somebody, come to an event like that, have a network, spend a bit longer in the lab, look for something that you might not find, even if it's a negative finding, there will be somebody eventually that benefits from that. And I've been a direct recipient of other people putting forward their whole genome sequence, and then a common change was noted in people with the type of cancer that I have, and that then qualified me for a treatment that otherwise I wouldn't have been eligible for, and I wouldn't have been, I wouldn't have been here now. So it's a very, you know, profound thanks to all the people that are involved from everybody within Genomics England, all the researchers, all the other patients that speak up. We each have a contribution to make. Sharon Jones: Yeah, that's amazing. That must have been quite a poignant experience when you, you met him at the, um, Summit, of just kind of the other side of the, the world that you don't often see. And they obviously don't see our side of the world, and it's kind of interesting to join those dots and kind of come full circle. So moving on. In terms of like, collectively, there's a lot of impact that you have and there's a noticeable shift in organisations where people with lived experience are playing, you know, a much bigger role in decision making. Can you help our listeners understand how people are getting involved in governance and shaping research? Lisa Beaton: From my perspective, it comes back to that word "embedding". I think historically, perhaps there's been an, an almost about-face. Um, it's kind of come at it very backwards, that that embedding has almost happened as an afterthought, which is sort of a bit of a misnomer way of explaining it. When you're talking about embedding, obviously it should be the foundation. Historically, at least both from the parent, parental perspective, I've seen that with clinicians, for example, that historically I've been made perhaps to feel a bit of a thorn in someone's side, that even though we're there for an appointment about our young person, when I'm asking questions that they don't necessarily want to answer, you know, I'm almost the, the add-on rather than the reason that we're there. And I think there has been a paradigm shift in everybody's approach to that. So thinking much more about, you know, the, the what's, the wherefores, the whys. How do we ensure that right from the get go, that patient or participant voice is heard, and it shapes the question. And one of our other Panel members frequently uses the phrase, "nothing about us without us", because that is front and centre of why, you know, genomics exists in the first place, really. Without that data, the conversation ceased to exist. It, it's so vitally important, not just for us as an individual, not just for our family members, but for the greater good, if that doesn't sound too grandiose. Sharon Jones: No, not at all. And, and, and Frances? Frances Allan: I think having raised that value of patient advocacy: what we have to say. So it started off, people felt that they should have some, so they included it, but actually once they started to include it, they thought, this does contribute to our study. And starting at the very beginning of the research project, so what is reasonable to ask participants and patients to do? Is it something that there is benefit from? And trying to see that end goal right at the beginning. And we might help shape a research study that actually goes in a beneficial direction, rather than the researchers starting alone, and then actually getting into the study, and the procedure is, is too painful to endure, there's no clinical benefit, it's not something that can be translated into clinical practice, and it gets abandoned. So start us right at the very beginning, and our perspectives may not be what, what researchers or clinicians think. Uh, with that lived experience, however empathetic you are, the lived experience is a very unique lens and position to look from. Sharon Jones: Yeah, it absolutely is. So, given that you are part of a small group and you know, you're representing a much wider community, essentially, like, what are the considerations that you, you have to bear in mind? Lisa Beaton: I think we can only speak, obviously, to our own individual experience and we are very aware that, you know, diversity, ethnicity, inclusion is something that is a much bigger conversation and certainly something that we want to broaden in, in the panel itself. And I know there's kind of lots of work and thought going into how that can widen those perhaps more diverse communities that historically... It's not that, there's, there's been a terminology that, you know, they're difficult to access, but actually the question is wrong there. The statement is wrong. It's not that they're difficult to access, it's just that we've been asking that incorrectly. And we need to ensure that they are, uh, empowered to bring their stories forward and find ways to push forward for their inclusion. We need to ensure that everybody's voices are heard, otherwise the data set is wrong from the off. So I think that's something that we're all very minded when we speak about, and definitely want to, to diversify the pools of data that come in. That, that has huge resonance for, you know, shaping genomic and genetic policies moving forward, for sure. Sharon Jones: Yeah, definitely. Frances, sort of broadening out that question. Does it feel like a lot of pressure and a lot of responsibility, kind of representing, you know, in this kind of small group where you are almost speaking on behalf of, you know, a lot of people? Frances Allan: I think it mainly feels like a, a privilege, Sharon, to be in that position, to have a say. And back to my, one of my motivators for joining is why would people not choose to do this? And actually understanding why that is. And is it the, you know, the lack of knowledge of genomics? And there is a lot of, of fear about what can be discovered. But understanding the immense benefits from that so people don't miss out on those opportunities. Our genomes contain the, the blueprint to us, but also how we would respond in certain situations, and you want everybody to be using those leverage points. You know, cancer's a really difficult disease to manage, and anything you can do to make it slightly easier, slightly more comfortable, slightly more successful, we want to do that. So every time we speak out and we advocate for the benefits of genomics, we might gain one more person who's going to feel that a successful outcome. Sharon Jones: Yeah, and who knows what, what that can mean for their family and, and sort of further down the line. So have you got any advice for, or encouragement, or any tips for, you know, potential participants who are thinking of getting involved in, in groups? You know, it doesn't necessarily mean the Participant Panel, but just generally, sort of groups related to their conditions or their family's conditions. Frances Allan: Yeah, I think the value of the one's personal experience: don't underestimate that. Everybody has an individual journey and they can comment and reflect on that. And anybody interested in, in joining our panel, you can include in the, the copy or description, ways they're getting in touch with us and speak to us about what that, what that involves. And uh, Lisa said at the, the beginning, you come and it's a huge learning curve, but there are people to support you and guide you through that way. And the learning is, is just fascinating. And there's a position for everybody and everybody's point of view to be heard, and you will be heard. Sharon Jones: Thank you. Lisa? Lisa Beaton: Yeah, I think I might steal a phrase or two actually from some, uh, well-known brands. But, um, one would be "just do it" and the other would be "feel the fear and do it anyway" because, you know, you are amongst friends, first and foremost. We all, we do tailor our experiences, and clearly we self-censor at times because that's necessary to protect the privacy and dignity of not necessarily ourselves, but as we've already alluded to in our chats, but you know, our family members, the wider people that you are aware will be hearing this. And you don't necessarily want certain medical information about your family members out there, because it's not your information to share. But in terms of joining the panel and, you know, having a voice, giving more voices, giving more diverse data, we, we need as many people as possible to come. We need more voices. We need to get our genetic, genomic information out there, uh, in front of the researchers and, and all involved with Genomics England, um, and other patient advocacy groups, as well, because that will only benefit the greater public. Sharon Jones: Thank you. And Kirsty? Kirsty Irvine: I'm just thinking about sort of general tips building on what Lisa and Frances have said. You don't need to be a seasoned public speaker. I think that's something, absolutely not. We've got some fantastic speakers in the group. Um, but then we've got people in the group who've got, who have got different skills, so don't think that you need to be ready to give a TED Talk at the first meeting, be that the Participant Panel or whatever group you might be motivated to join. We, we just need good listeners. I've chaired meetings in the past where people, uh, wanted to contribute via the chat function, and that worked absolutely fine. They would put their incredibly insightful, erudite comments in the chat, and then I would relay them to the group, and that was how we got that person's input, because we realised that they weren't necessarily going to speak up in the forum. So whatever your communication style, we can accommodate it at the Participant Panel and we would be delighted to hear from you. Sharon Jones: That's great. Thank you. Um, final question. So what do you hope the next 10 years of participant involvement will look like? Kirsty Irvine: I think if I could use a little catchphrase, which I'm sure is not mine, but I would like to see us fully integrated as partners, not participants. I'll put that out there. I mean, Sharon, I wonder if I could sort of also open things up to how are things going to look in another 10 years, because there's been some statistics that have really struck me, uh, at presentations that, that we've heard. One of them being that in the next, you know, within 10 years, around about half the data in the National Genomics Research Library will be from, I don't know if this is the best name for it, the general population. So that's people who aren't necessarily seeking an answer, or have a diagnosis or a condition. These are people who have donated their genomic data through being part of, you know, research projects. And, as a panel, so Genomics England's evolving and the panel will be evolving. And in 10 years time, the panel will need to be, I believe, true to the original route. So, 100,000 Genomes Project. Uh, the people who've had their whole genome sequencing through cancer diagnoses. You know, there's a significant COVID cohort, but also people of the gen, general population. So how do we advocate for and look after everyone in that broad group of people. So I think that, that's both a challenge, that's a challenge for us, but it's also really exciting to think how we can meet that challenge. Sharon Jones: Yeah, definitely one, definitely an opportunity and a challenge, and one that will take a lot of thinking in the next few years. Frances? Frances Allan: Yeah, thanks Sharon. I think looking forward to that, that 10-year period is how genomics just becomes a normal part of everybody's healthcare, so we all fully understand the benefits of it. People are willing to participate in it and then using lots of different types of data to go into the National Genomics Research Library. So at the moment, it's mainly genomics material, but there's been a lot of work done with the cancer cohort, putting in diagnostic images, pathology slides, other clinical data, written notes, and this can then be accessed under the strict criteria of the access review committee. It can be accessed by clinicians, researchers across the world. And we want our research library to be the premium source of that information and to have collaboration with researchers, clinicians, participants, worldwide, to speed up the generation of that information and those positive outcomes. It's a, a very, very rich data source now, and it'll only get bigger as we include people from the general population. Sharon Jones: That'd be amazing and have some quite incredible global, um, outcomes. Lisa? Lisa Beaton: I just had a little image actually pop into my head that I, I almost look at it a little bit like we're doing one of those, I think they might be called an "impossipuzzle" where actually we don't have the picture on the box, but we have lots and lots of little pieces that are all going in together and they're making up a really creative, wonderful, fantastic, woven story, a tapestry as you were, of different information that's coming through. And how incredible, you know what, what a wonderful legacy we're building, you know, and this amazing picture that's going to evolve and change and develop over the years to come. Sharon Jones: That's a wonderful note to end on, so we're going to wrap it up there. Thank you for listening. A special thanks to our guests, Kirsty, Frances, and Lisa, for joining me today as we discussed how lived experience can shape health research. If you'd like to hear more like this, please subscribe to the Behind the Genes on your favourite podcast app. And if you want to know more about the Participant Panel, you can head to the Genomics England website and listen to our 10-minute explainer podcast, Genomics 101. Behind the Genes is produced by Deanna Barac, Florence Cornish, Sophie McLachlan and Dave Howard at Bespoken Media.

To celebrate the 250th anniversary of the signing of the Declaration of Independence, historian Beverly Gage took a road trip around the country to visit over three hundred historic sites. Those travels are documented in her new book, This Land is Your Land: A Road Trip through U.S. History. Gage joins us this hour to reflect on what she learned about the country, and what's ahead on this anniversary year. GUEST: Beverly Gage: The John Lewis Gaddis Professor of History at Yale University. She is the author of the Pulitzer Prize winning book G-Man: J. Edgar Hoover and the Making of the American Century. Her new book is This Land is Your Land: A Road Trip through U.S. History Music featured (in order): Road Song – Wes Montgomery This Land Is Your Land – Sharon Jones and the Dap Kings Birmingham – Randy Newman Song About America – Olive Klug America – Simon and Garfunkel I See America – Joy Oladokun Support the show: http://www.wnpr.org/donateSee omnystudio.com/listener for privacy information.

durée : 00:59:28 - par : Nathalie Piolé -

In this episode, we explore how individualised medicines are evolving from “n=1” treatments (a treatment effective for a single individual) into approaches that could transform care for many people living with rare conditions.  Advances in genomic medicine are making it possible to design highly targeted treatments based on an individual's genetic information. While these therapies may begin as bespoke solutions for a single patient, they can often be adapted, refined or reused to benefit others with similar conditions.  While the research is evolving, the systems needed to deliver these treatments at scale are still catching up. From regulation to access, our guests discuss what needs to change to turn this potential into reality.  Our host Sharon Jones, is joined by:  Ana Lisa Tavares, Clinical Lead for Rare Disease Research at Genomics England  Mel Dixon, Participant Panel member and CEO and Founder of Cure DHDDS  If you enjoyed today's conversation, please like and share wherever you listen to your podcasts.  “However rare your condition is, someone has a right to have hope. Everybody should have a hope that we should be able to find a treatment.” You can download the transcript or read it below. Sharon: What if treatments once designed for just one person could now help many others? Thanks to advances in genomic medicine, regulations are changing and research is expanding. This opens up more options for treatments for rare conditions. But what does this mean and how close is real change? I'm Sharon Jones, and this is Behind the Genes. We look at how genomics is changing healthcare, covering everything from cutting-edge research to real-life stories. Individualised medicines are a fast-moving area, but there's still a big gap between scientific progress and what's actually happening to patients. You could call it the gap between hype and hope. Ana Lisa: However rare your condition is, someone has a right to have hope. Everybody should have a hope that we should be able to find a treatment. Sharon: Coming up, we'll hear from Ana Lisa Tavares, Clinical Lead for Rare Disease Research at Genomics England, and Consultant in Clinical Genetics at Cambridge University Hospital, as well as Mel Dixon, member of the Participant Panel at Genomics England and CEO and founder of Cure DHDDS. Mel opens this chat by explaining why developments in individualised healthcare really matter to her. Mel: This issue is really personal to me. I have three children, two of whom are affected with an ultra-rare DHDDS gene variant, for which there is currently no treatment. Their condition causes symptoms such as, well, it varies between mild to severe learning difficulties, seizures, tremors, and movement and coordination difficulties. But the, the most worrying thing for us was that this condition is actually also progressive. So over time it becomes more of a Parkinsonism and some patients experience dementia-like symptoms and psychosis. So for us to get a treatment that targets the genetic cause of, of their condition is, like, the most important thing in, in our lives. If we could intervene now, they could potentially, at the stage they're at, you know, live an independent life with, with some supports. But if the disease is left to progress, it would be a very different outcome for them. Sharon: I mean, that sounds so difficult and I can't even imagine how life is for you and your family. And I can see what is driving you to find anything to extend the life of your children and to give them that opportunity to, to have a better quality of life. And then Lisa. Ana Lisa: It's a huge burden for families to carry. And I think at the moment there's an additional layer of burden, which shouldn't fall on families, to feel like they need to forge a pathway for their child to have a chance of a treatment. That's, that's a lot to bear. Mel: I think as well, families feel they almost have to become mini scientists in their children's specific condition overnight, because you go to these appointments with the consultants and nobody's heard of the condition and they don't know, they just don't really know what to do with you. So they're asking you, you know, so tell me about this, this gene change. What, what does it do? What does it mean? So you have to become the mini professor in your child's condition to be able to advocate for them. We've had to really learn on our feet so that we're able to advocate and push for research into DHDDS, because without us doing it, nobody else was going to be. Sharon: Yeah. So that's, you know, that's partly what we're here and what this podcast is for, it's here to support families to, to understand this stuff. And Ana Lisa, can you just break it down to us, what is individualised medicines? Ana Lisa: An individualised medicine that's made for one individual person. In reality, sometimes there are other individuals that can also benefit from the same medicines, and sometimes actually, although the medicine is made for one specific person, it might be made using a strategy that other patients could also benefit from, either directly, exactly the same, even, or through tweaking them so that they could work for a different patient. In the context that they're most often referred to at the moment, they're therapies that are being made based on the genetic information about somebody. Sharon: Thank you. I mean, that sounds amazing. And now coming to you, Mel, what does receiving a diagnosis mean for a family? And how do you navigate the space between finally having answers and the reality that the treatment may not yet exist? Mel: So for us, I think, we went down the, the diagnostic route in the hope that we would be able to find a treatment for our children, or there would already be a treatment in place. But unfortunately when we got their diagnosis, we were told that their, their condition was ultra rare, neurodegenerative and also newly discovered. So there was, there was no treatment pathway and actually minimal research happening into it at the time. So it was frustrating, upsetting, um, and it felt like quite a hopeless situation at the start, but actually this was just over three years ago. And through a lot of proactiveness on our part in fundraising, we've been able to better understand the condition and we now have treatments in the pipeline. So in that three-year window, from there being nothing, we now have treatments both in terms of potential drug repurposing candidates and also, um, an individualised therapy called an ASO is also in development for them. So it was hard, but it's given huge benefit to us. Otherwise, we'd just be going, remaining going from specialist to specialist without having any answers or understanding why their symptoms were progressing. Sharon: I mean, that sounds really, really tough and you know, coming back to you, Ana Lisa, could you talk us through how genomics is changing the way we can treat rare conditions? You know, what types of individualised medicines now exist and how do they even work? Ana Lisa: Maybe I'll start with how some of these medicines are working. So with, without going into details, but the sort of principle that these medicines might be able to, to do something called gene editing. So our, our DNA, uh, the instruction manual is made up of genes and it's now can be possible scientifically to change even a single DNA letter code in somebody to try and ameliorate the symptoms of their rare condition. You know that's phenomenal scientific progress to be able to do that. I think a lot of people have heard about gene therapy, where one is trying to get into the body a gene or part of a gene that might be able to sort of replace the function of a gene that isn't working as it should. There are various other strategies. So our DNA is actually used to send messages to our body, if you like, to, to decode these instructions. And so there are medicines that target the next step in this process, the RNA, which are the ASO therapies that Mel was referring to earlier. And really what those are doing are either trying to correct for a protein in our body that isn't working as it should, or to try and get rid of one that shouldn't be there. And so they can act in different ways. And that's actually quite powerful, because you can, theoretically, use these strategies to correct for different genetic rare conditions. So I think going to the sort of first part of your question, maybe if I can phrase it as "directly at source". If you can go upstream and target in a very direct way the cause of a rare condition, then actually you might be able to apply those same principles to many different types of rare condition. We know that there are, you know, 8,000 as a very ballpark number of rare conditions, and it might be that these strategies could be used I don't want to say for all rare conditions, but for many rare conditions where we find the genetic cause, these strategies could collectively be a very powerful way to treat them. And traditionally we've had to understand all the underlying biology, find a druggable target, find a drug that could target that, that's safe, effective, et cetera. And that's a lot of work. And that's still very, very valuable. If we were going to do this for these thousands of conditions, it would probably take us hundreds to thousands of years, collectively. And these strategies provide a lot of hope for being able to do this in a, in a more efficient way, where we can actually use the information used to treat one rare condition and apply those learnings to another rare condition. Sharon : I mean, that's really helpful to understand. So if the science is there, why aren't more patients benefiting from it yet? You know, what's standing in the way from your perspective? Ana Lisa: That's a really good question, and it's complex because the, our whole ecosystem is made up of, of many parts that go from finding a potential strategy that could help a rare condition to a patient benefiting from that. And I think one thing that maybe we haven't touched on yet is the fact that rare conditions can be really rare and affect a really small number of people individually, even though we know collectively they affect so many. You know, in the past it's been easier, if you're taking a condition that's common, that affects thousands of people, it's easier to see and to be sure whether your new medicine is actually working as you think it does and should, and having the benefits that you think. The, the sort of regulators have really clear guidance. We have lots of knowledge about how to assess treatments and have a randomised clinical trial, for example. How the reimbursement process may work in a public healthcare system. And when you, when you, when you sort of set down into the really rare, this is difficult for each stage of the journey. The transformation that's needed is a whole, system-wide transformation to be able to regulate in a scalable, equitable way, these therapies that could actually be an N of one treatment for one individual, that actually maybe one day another individual may also benefit, and sometimes even a group of individuals. It's not just the, the regulator, it's also how do you make it viable. So again, you have to make it scalable, equitable. And even to implement in the NHS down to this very "N equals one" level, and demonstrate that patients could benefit from these treatments, might require sort of fancier ways of assessing these treatments, whether it's statistics, other methodology and I think it's really the system-wide nature that makes this tricky, but is also a fantastic opportunity for, for collaboration, because that, that sort of end goal and benefits could be so, so great. Sharon: Yeah, absolutely. And I mean, Mel, for your side of things, it must sound, you know, quite frustrating where the people in the rare community to not see the support being made more readily available? Mel: Yeah, it is particularly difficult for patients and their families. I think in our case, when you're dealing with a neurodegenerative condition, time is of the essence. So when you know that the science is available or it's ready, but you don't have the systems in place to implement them to the patients so that they can access these much-needed therapies, it's worrying and frustrating. And also I see our children are affected with, with, you know, one of these N of few conditions that there's, you know, there's only 59 confirmed cases of DHDDS worldwide, and we've seen how the system firsthand doesn't fit ultra-rare patients. We can't, when we were looking at drug repurposing, we can't do a traditional clinical trial because we don't have the patient numbers and we don't have the funding. So a placebo-controlled trial just wouldn't be possible for us when there's only, I think, seven confirmed patients in the UK and, um, four that we're actually in, in, in touch with. So it does feel, I think, as Ana Lisa was saying, that we really need a system rethink, um, and refit so that it does start to accommodate these ultra-rare conditions, especially now as there's therapies which are showing huge benefit to patients. Sharon: And so with like all of these challenges, where are you seeing things shift and what does meaningful progress really look like for you? Mel: At the end of last year, the MHRA announced that they were rewriting the regulatory framework for rare conditions, and that fills us with lots of hope for the future. They're recognising that the traditional systems don't work for particularly ultra-rare conditions, and now that we do have these therapies in the pipeline, we, we want to get the patients to be able to access them. And we're also seeing innovation in how evidence is generated and measured. We witnessed this firsthand with our son as he was undergoing baseline tests for his ASO therapy. You know, the use of digital biomarkers, of real-world evidence, how they're increasingly being used for these N of one or N of few populations. And how the individual receiving the treatment becomes their own comparator. So you're not relying on these big natural history studies of the disease or placebo controls. It's you're looking specifically at that individual, getting a really strong baseline and then looking, once they're dosed with the medication, is that improving or stabilising symptoms? So I think this shift in focus is really meaningful for the ultra-rare community and also for them to be part of the decision-making process of what, what benefits do they want from a drug? Like what is meaningful to them? I think there's much more talk about the patients and how the, what will benefit them most. It's not necessarily what the scientists would think or research would think would most benefit, but what, what would make a meaningful difference to the patient? Sharon: I mean, that's good to know because it's kind of putting the person at the centre of, you know, this is what it's all about, isn't it? It's not just the science. We're trying to treat people and it's putting people, people first. Ana Lisa: Just to build on that, it's exactly that, that awareness that is, is growing, I think, that there are so many people affected by a rare condition and, and however rare your condition is, someone has a right to have hope and that the system should be able to cater for many rare conditions, you know, whether they're an ultra-rare or an actually almost common rare condition, everybody should have a hope that we should be able to find a treatment. And it's not a hopeless situation that it's, you know, never going to happen or be too difficult. It's quite powerful, hope. If you can solve for the truly individualised medicine, then you at the same time may also be helping everyone in-between a really common condition and a really rare condition, because right now the system works for common conditions. And if you can take it right down to the sort of radical of, example of an individualised medicine made for one person, then you are also forcing the system to a change for everybody else. And I think that's one of the great benefits of thinking about it as a joined-up system. Sharon: So how do you each navigate between hype versus hope when it comes to rare therapies? Mel? Mel: I like to focus on hope, because when we got our diagnosis, we felt really hopeless and that's a really dark place for a family to be. But as we learnt more about their condition and the rare condition landscape and genomics, we actually learned of all these new therapies that were in the pipeline. We were hearing about, you know, recently, conditions like Huntington's Disease that you never, never previously had any disease-modifying treatment, how they're now being able to be treated with gene therapy with really positive effects. Similarly for other neurodegenerative conditions that have been treated with ASOs, how they're seeing not just disease stabilisation, but improvements. So I know it's, it's still, like, relatively early days with these technologies and therapies, but I think it, it allows families to have hope, which is, which is really, really important, because that statistic, you know, of the, of 95% of rare conditions not having a treatment, it's, it's a really brutal one, uh, to be told at the outset or to learn at the outset. So, you know, if, if these therapies can, can make a huge dent in that, that would be life-changing. It would make a profound difference to many, many families, and I think there's a lot of reason to have hope, taking all of that into consideration. Sharon: And then Lisa? Ana Lisa: I think to work in this area, one needs to be full of hope and optimism because there are so many, um, challenges to overcome as a community. Uh, but I think that means that people are also incredibly collaborative, because they know that we need to work together for this to succeed. And no one, you know, one individual, one organisation can do it on their own. It truly has to be a crosscutting, collaborative endeavour. The fact that we, in the UK, have resources like the National Healthcare System,Genomics England in partnership with the NHS runs a National Genomic Research Library. And so the fact that you could look at, at tens of thousands of, of genomes for many, many individuals with rare conditions. That gives me hope because it means that if a treatment is made for another person, it could be in a different country in the world, and if we could find another patient, it doesn't matter what specialty they're under, where they are, we should be able to find them and connect with their clinical team if, you know, if they've consented for the National Genomic Research Library. And so to me, that feels, that whilst there's, there is a lot of hype in the sense that some of the really well-publicised cases, really had a lot of people working on them and a lot of resources to make it happen. But that gives hope to everybody else that follows that actually it is doable and if we can make better systems, and having these national resources that we do, the fact that, there are a lot of guidelines being written at the moment, both international and national. And again, they show that the sort of scaffolding is starting to be in place to apply these in an equitable scalable way. It might not be that you're so much looking for a specific rare condition as for a particular type of genetic variant that could be targeted in the same strategic way, and that therefore you could look across many different rare conditions. So again, all these sort of pieces of the puzzle are, are filling me with, with, with hope. Sharon: You touched upon, um, inequity there. Now, you know, is there a risk of inequity given what we've talked about in terms of those challenges? Ana Lisa: I think we, we always have to have the lens of equity in everything we, we do. And that, and that really does apply to healthcare and, and in fact, probably the whole rare disease community are, are, are not well served in terms of therapies at the moment. There are so few, um, therapeutic options and so I think there's a massive inequity in that this, our systems are not geared, uh, towards rare conditions. I suppose, you know, different countries have different healthcare systems and some of the sort of first personalised therapies may require a lot of money behind them to, to happen, but they will be pioneers in leading the way for how this can be done. And I think in the UK we have a lot of the infrastructure and the, a sort of a strong, that's very equitable, I think. And so we could do this in a, in a much more open and equitable way. Sharon: Mel? Mel: Cost is always, unfortunately, and it, when it's your family that's affected you, you know, you hate the thought that things are coming down to cost and, and money. But I, I think as Ana Lisa said, if, if the system absorbs the initial cost. You know, it seems that those longer-term costs could come down significantly. We already see with our very small DHDDS community that an ASO, which is an allele specific that was made personally for one, for one child, can actually also benefit my son, even though they have a different variant. So if the cost of the ASO is 1.2 million per person, but if you suddenly find actually one other person can share that, that's almost halving the, the cost. And then if then you're finding out that actually, oh no, 3, 4, 5, 10 people can all have that same ASO, suddenly it becomes much more cost-effective and more sustainable. So I think, as we have to think about cost, I think that also allows us to have more hope that these therapies can, the cost of these therapies that are obviously hugely expensive at the moment, can be brought down in the longer term. Ana Lisa: There are a lot of things that people want to do in the NHS. People can be working under quite hard circumstances, so to talk about making a therapy for one individual can be difficult and people can sometimes, I think, think that it's a pie-in-the-sky conversation. However, I think that, you know, all the clinicians I know who work with families with rare conditions, what they'd most like to be able to do is to be able to offer a therapy. And so I think a lot of people see this as a, as a big opportunity, despite these initial hurdles. One thing I often think about is my grandfather, when he was alive, every phone conversation, he would start with, "How many lives have you saved today?" And so I think that's the, that's our challenge. Sharon: Wow. That's, that's really powerful. Mel: Just echoing really what Ana Lisa was saying, I feel the, um, inequity lies in rare conditions as a, as a whole, from the point of diagnosis to the lack of pathway, um, to, to the lack of system in place for them. You wouldn't have a patient with a life-changing cancer diagnosis receive that information in a telephone call, and that is the stark reality for many rare disease patients. That's how they receive the, that's how they often receive the news. That was certainly our, our experience. And, and from that point, there was then no pathway. It's just this horrendous feeling of isolation. And I think now that there are these treatments in place and therapies in, in place, it's about time we change that because often the rare, the rare condition community, and certainly those with ultra-rare conditions as well, they're probably like some of the most underserved members of the community in that it's their parents and their families that have to advocate. Otherwise, without that, they, they often wouldn't stand a chance of understanding the disease, let alone finding a treatment. So I think the whole system needs to have a reset, to think about these rare condition patients and, put them at the heart as they do for more common conditions. Ana Lisa : I completely agree. And you mentioned cancer, and there are actually quite a few parallels. So there might be really common cancers that affect a lot of people that are being, uh, subsetted down into different groups depending on the genetics that are related to that particular cancer and therefore what treatments might be most effective. And so I think there's, there's a lot we can each learn from each other between the rare disease and cancer communities. Perhaps as in rare disease we scale up to apply the same strategies to many different rare conditions and patients. Even if they're being tweaked for their particular genetic variant and cancer, sometimes one is subsetting down to treat specifically that, exactly that cancer subtype. So there's a lot we can learn and I completely agree that the, the rare disease community deserves the same chance at at treatments, and the hope that that comes with. Sharon: Thank you. It feels like there needs to be some kind of seismic system change along with this piece around collaboration and how, you know, the science is there, but it's how do we bring it to families who are facing these difficulties with it, you know, their children and, and rare conditions. We'll wrap it up there. Thank you to our guests, Ana Lisa Tavares and Mel Dixon, for joining me as we discussed the evolving landscape of individualised medicines. And thank you for listening. If you'd like to hear more like this, please subscribe on your favorite podcast app. Behind the Genes is produced by Deanna Barac, Florence Cornish, Sophie McLachlan and Patrick Wallace at Bespoken Media.  

Two Hours of trashy garage, punk, rock, soul and fury with host DJ JDub.  This week: a bunch of good stuff!  It's Black History month so we're celebrating that this episode!Outrage Radio playlist – February 19, 2026[0:00]1.       Curtis Knight & The Squires (feat. Jimi Hendrix) – Hornets Nest [2:40]2.       The Gories – Hey Hey We're The Gories3.       Death – Politicians In My Eyes4.       Pure Hell – Hard Action5.       The Controllers – Another Day6.       X-Ray Spex – Oh Bondage Up Yours!7.       Bad Brains – Banned In D.C. [20:44]8.       Des Demonas – Teen Stooge9.       The BellRays – Black Lightning10.     Ike & Tina Turner and The Ikettes – Contact High11.      Ray Charles – Mess Around12.     Chuck Berry – Can't Catch Me13.     Sharon Jones & The Dap-Kings – Got A Thing On My Mind14.     James Brown – Super Bad  [44:10]15.   Paris – Guerillas In The Mist16.   Professor Longhair – Go To The Mardi Gras17.    Betty Davis – Walkin Up The Road18.   Outkast – Idlewild Blue (Don't Chu Worry ‘Bout Me)19.   Junior Wells - Messin With The Kid20.   Round Robin – I'm The Wolf Man [1:03:38]21.   Andre Williams – Only Black Man In South Dakota22.   Thin Lizzy – Thunder & Lightning23.   Body Count – Raining Blood / Postmortem24.   Mannequin Pussy – Of Her25.   Dead Kennedys – Government Flu26.   Gil Scott-Heron – Whitey On The Moon27.   Funkadelic – I Got A Thing, You Got A Thing, Everybody's Got A Thing28.   Mavis Staples – Change29.   Frantic Rockers – All Through The Night30.   The Noisettes – Don't Give Up [1:34:08]31.   Howlin Wolf – Spoonful32.   Public Enemy – Fight The Power33.   Aretha Franklin – Rock Steady34.   Sly & The Family Stone – Sing A Simple Song35.   Bob Marley & The Wailers – Natural Mystic [1:52:44]36.   Little Richard – The Girl Can't Help It37.   Bo Diddley – I'm Looking For A Woman38.   Elmore James – Rollin' And Tumblin'Outrage Radio is a live radio show that broadcasts on Thursday nights, 9-11PM from Downtown Los Angeles at the LuxuriaMusic .com radio studio. 

Sessi

Ya Tseen pushes the boundaries of the musical collaboration's signature psych-pop sound with their latest album, “Stand on My Shoulders.” It's the second full-length album led by musician, visual artist, and totem carver Nicholas Galanin (Tlingit/Unangax̂) under the Seattle-based Sub Pop Records label. The music features diverse collaborations from the indie rock group Portugal. The Man, famed singer-songwriter Meshell Ndegeocello, and the experimental hip hop artist Pink Siifu. It explores themes of kinship and collectivism but also pays homage to Galanin's late father – lauded Tlingit silver carver and musician Dave Galanin. Cochemea Gastelum‘s latest offering, “Vol. III: Ancestros Futuros“, completes an album trilogy that explores dreams, oral history, memories (both real and imagined), and Gastelum's Yaqui identity. The new recording brings together the fruits of Gastelum's 25 years in the music business performing with the likes of Sharon Jones and the Dap-Kings, avant-garde jazz saxophonist Archie Shepp, and the popular rap-duo Run the Jewels.

Ya Tseen pushes the boundaries of the musical collaboration's signature psych-pop sound with their latest album, “Stand on My Shoulders.” It's the second full-length album led by musician, visual artist, and totem carver Nicholas Galanin (Tlingit/Unangax̂) under the Seattle-based Sub Pop Records label. The music features diverse collaborations from the indie rock group Portugal. The Man, famed singer-songwriter Meshell Ndegeocello, and the experimental hip hop artist Pink Siifu. It explores themes of kinship and collectivism but also pays homage to Galanin's late father – lauded Tlingit silver carver and musician Dave Galanin. Cochemea Gastelum‘s latest offering, “Vol. III: Ancestros Futuros“, completes an album trilogy that explores dreams, oral history, memories (both real and imagined), and Gastelum's Yaqui identity. The new recording brings together the fruits of Gastelum's 25 years in the music business performing with the likes of Sharon Jones and the Dap-Kings, avant-garde jazz saxophonist Archie Shepp, and the popular rap-duo Run the Jewels. Break 1 Music: Twilight (song) Ya Tseen (artist) Stand On My Shoulders (album) Break 2 Music: Mahaha: Tickling Demon (song) PIQSIQ (artist) Legends (album)

Protest music is taking over TikTok. This hour we look at what's going on, and we hear from an artist about why she writes and performs protest songs. Plus, a discussion about what counts as a protest song and a brief look through the history of the genre, from "Strange Fruit" and "This Land is Your Land" to today. GUESTS: Renee Koma: A musician who goes by Renee Christine. Her latest album is “Appalachia" Isabella Gomez Sarmiento: A reporter with NPR Music Dorian Lynskey: Journalist and author of multiple books, including "33 Revolutions Per Minute: A History of Protest Songs, from Billie Holiday to Green Day". His most recent is “Everything Must Go: The Stories We Tell About the End of the World”. He is also co-host of the "Origin Story" podcast MUSIC FEATURED (in order): Tudo O Que Você Podia Se – Milton Nascimento Lehigh Valley – Renee Christine The Bomb – Renee Christine Turtle Island – Renee Christine No Kings – Earth to Eve Heavy Foot – Mon Rovia War isn’t Murder – Jesse Welles Tonada Por Ella – Rawayana Kalaallit Nunaat, Kalaallit Pigaat – Kalaallit Strange Fruit – Nina Simone Ohio – Crosby, Stills, Nash, & Young This Land Is Your Land – Sharon Jones and the Dap-Kings Say Her Name (Hell You Talmbout) – Janelle Monae Support the show: http://www.wnpr.org/donateSee omnystudio.com/listener for privacy information.

In this special episode, recorded live at the 2025 Genomics England Research Summit, host Adam Clatworthy is joined by parents, clinicians and researchers to explore the long, uncertain and often emotional journey to a genetic diagnosis. Together, they go behind the science to share what it means to live with uncertainty, how results like variants of uncertain significance (VUS) are experienced by families, and why communication and support matter just as much as genomic testing and research. The panel discuss the challenges families face when a diagnosis remains out of reach, the role of research in refining and revisiting results over time, and how collaboration between researchers, clinicians and participants could help shorten diagnostic journeys in the future. Joining Adam Clatworthy, Vice-Chair for the Participant Panel, on this episode are: Emma Baple – Clinical geneticist and Medical Director, South West Genomic Laboratory Hub  Jamie Ellingford – Lead genomic data scientist, Genomics England  Jo Wright – Member of the Participant Panel and Parent Representative for SWAN UK  Lisa Beaton - Member of the Participant Panel and Parent Representative for SWAN UK  Linked below are the episodes mentioned in the episode:  What is the diagnostic odyssey?  What is a Variant of Uncertain Significance?  Visit the Genomics England Research Summit website, to get your ticket to this years event. You can download the transcript, or read it below. Sharon: Hello, and welcome to Behind the Genes. My name is Sharon Jones and today we're bringing you a special episode recorded live from our Research Summit held in June this year. The episode features a panel conversation hosted by Adam Clatworthy, Vice-Chair of the Participant Panel. Our guests explore navigating the diagnostic odyssey, the often-complex journey to reaching a genetic diagnosis. If you'd like to know more about what the diagnostic odyssey is, check our bitesize explainer episode, ‘What is the Diagnostic Odyssey?' linked in the episode description. In today's episode you may hear our guests refer to ‘VUS' which stands for a variant of uncertain significance. This is when a genetic variant is identified, but its precise impact is not yet known. You can learn more about these in another one of our explainer episodes, “What is a Variant of Uncertain Significance?” And now over to Adam. -- Adam: Welcome, everyone, thanks for joining this session. I'm always really humbled by the lived experiences and the journeys behind the stories that we talk about at these conferences, so I'm really delighted to be hosting this panel session. It's taking us behind the science, it's really focusing on the people behind the data and the lived experiences of all the individuals and the families who are really navigating this system, trying to find answers and really aiming to get a diagnosis – that has to be the end goal. We know it's not the silver bullet, but it has to be the goal so that everyone can get that diagnosis and get that clarity and what this means for their medical care moving forwards.    So, today we're really going to aim to demystify what this diagnostic odyssey is, challenging the way researchers and clinicians often discuss long diagnostic journeys, and we'll really talk about the vital importance of research in improving diagnoses, discussing the challenges that limit the impact of emerging research for families on this odyssey and the opportunities for progress. So, we've got an amazing panel here. Rather than me trying to introduce you, I think it's great if you could just introduce yourselves, and Lisa, I'll start with you. Lisa: Hi, I'm Lisa Beaton and I am the parent of a child with an unknown, thought to be neuromuscular, disease. I joined the patient Participant Panel 2 years ago now and I'm also a Parent Representative for SWAN UK, which stands of Syndromes Without A Name. I have 4 children who have all come with unique and wonderful bits and pieces, but it's our daughter who's the most complicated. Adam:  Thank you. Over to you, Jo. Jo:  Hi, I'm Jo Wright, I am the parent of a child with an undiagnosed genetic condition.  So I've got an 11-year-old daughter. 100,000 Genomes gave us a VUS, which we're still trying to find the research for and sort of what I'll talk about in a bit.  And I've also got a younger daughter. I joined the Participant Panel just back in December. I'm also a Parent Rep for SWAN UK, so Lisa and I have known each other for quite a while through that. Adam:  Thank you, Jo.  And, Jamie, you're going to be covering both the research and the clinician side and you kind of wear 2 hats, so, yeah, over to you. Jamie:  Hi, everyone, so I'm Jamie Ellingford and, as Adam alluded to, I'm fortunate and I get to wear 2 hats. So, one of those hats is that I'm Lead Genomic Data Scientist for Rare Disease at Genomics England and so work as part of a really talented team of scientists and engineers to help develop our bioinformatic pipelines, so computational processes. I work as part of a team of scientists and software engineers to develop the computation pipelines that we apply at Genomics England as part of the National Health Service, so the Genomic Medicine Service that families get referred to and recruited to, and we try to develop and improve those. So that's one of my hats. And the second of those is I am a researcher, I'm an academic at the University of Manchester, and there I work really closely with some of the clinical teams in the North West to try and understand a little bit more about the functional impact of genomic variants on kind of how things happen in a cell. So, we can explore a little bit more about that but essentially, it's to provide a little bit more colour as to the impact that that genomic variant is having. Adam: Great, thank you, Jamie. Over to you, Emma. Emma: My name's Emma Baple, I'm an academic clinical geneticist in Exeter but I'm also the Medical Director of the South West genomic laboratory hub, so that's the Exeter and Bristol Genomics Laboratory. And I wear several other hats, including helping NHS England as the National Specialty Advisor for Genomics. Adam: Thank you all for being here. I think it's really important before we get into the questions just to ground ourselves in like those lived experiences that yourself and Jo and going through. So, Lisa, I'm going to start with you. The term ‘diagnostic odyssey' gets bandied around a lot, we hear about it so many times, but how does that reflect your experience that you've been through and what would you like researchers and clinicians to understand about this journey that you're on, essentially? Lisa: So I think ours is less an odyssey and more of a roller-coaster, and I say that because we sort of first started on a genetic journey, as it were, when my daughter was 9 weeks of age and she's now 16½ – the half's very important – and we still have no answers. And we've sort of come a bit backwards to this because when she was 6 months old Great Ormond Street Hospital felt very strongly that they knew exactly what was wrong with her and it was just a case of kind of confirmation by genetics. And then they sent off for a lot of different myasthenia panel genes, all of which came back negative, and so having been told, “Yes, it's definitely a myasthenia, we just need to know which one it is,” at 4 years of age that was removed and it was all of a sudden like, “Yeah, thanks, sorry.” And that was really hard actually because we felt we'd had somewhere to hang our hat and a cohort of people with very similar issues with their children, and then all of a sudden we were told, “No, no, that's not where you belong” and that was a really isolating experience. I can remember sort of saying to the neuromuscular team, “Well is it still neuromuscular in that case?” and there was a lot of shrugging of shoulders, and it just…  We felt like not only had we only just got on board the life raft, then we'd been chucked out, and we didn't even have a floaty. And in many ways I think I have made peace with the fact that we don't have a genetic diagnosis for our daughter but it doesn't get easier in that she has her own questions and my older children – one getting married in August who's already sort of said to me, you know, “Does this have implications for when we have children?”  And those are all questions I can't answer so that's really hard. Adam:  Thank you, Lisa. Yourself, Jo, how would you describe the odyssey that you're currently experiencing? Jo: So my daughter was about one when I started really noticing that she was having regressions. They were kind of there beforehand but, I really noticed them when she was one, and that's when I went to the GP and then got referred to the paediatrician. So initially we had genetic tests for things like Rett syndrome and Angelman syndrome, which they were all negative, and then we got referred on to the tertiary hospital and then went into 100,000 Genomes. So we enrolled in 100,000 Genomes at the beginning of 2017, and we got our results in April of 2020, so obviously that was quite a fraught time. Getting our results was probably not as you would want to do it because it was kind of over the phone and then a random letter. So, what I was told in that letter was that a variant of uncertain significance had been identified and they wanted to do further research to see if it might be more significant. So we were to be enrolled into another research project called Splicing and Disease, which wasn't active at the time because everything had been put on hold for COVID, but eventually we went into that. So, I didn't know what the gene was at that point, when I eventually got the form for going to get her bloods done…  So that went off and then that came back and the geneticist said, “That gives us some indication that it is significant.” So, since that point it's been trying to find more information and research to be able to make it a diagnosis. There have been 2 sort of key things that have happened towards that but we're still not there. So one of the things is that a research paper came out earlier this year so that's kind of a little bit more evidence, it's not going to give us a diagnosis but it kind of, you know, sits there. And the other thing is that my geneticist said, “Actually, yeah, it looks like it's an important change.”  That's as far as we've got. So we've still got work to do to make it a diagnosis or not.  Obviously if it is a diagnosis, it is still a one-of-a-kind diagnosis, so it doesn't give me a group to join or that kind of thing. But now I've got that research paper that I've read and read, and asked ChatGPT to verify that I've understood it right in some places, you know, with the faith that we put into ChatGPT (laughs), I've got a better understanding and I've got something now that I can look back on, the things that happened when my daughter was one, 2, 3, 4 and her development was all over the place and people thought that I was slightly crazy for the things I was saying, that “Actually, no, I can see what's happening.” So, it's like the picture's starting to come into focus but there's work to do. I haven't got a timeframe on that, I don't know when it's going to come together. And I always say that I'm a prolific stalker of the postman; ever since our first genetic tests you're just constantly waiting for the letters to drop through the door. So a diagnostic odyssey to me is just waiting for random events. Adam: I think what you've both kind of really clearly elaborated on is how you're the ones that are having to navigate this journey, you're the ones that are trying to piece this puzzle together, and the amount of time you're investing, all whilst navigating and looking after your child and trying to cope with the daily lived experience as well. And something you've both touched on that I'd love to draw out more is about how exactly was the information shared with you about the lack of diagnosis or the VUS or what's going on, because in our case you get this bit of paper through the post that has all these numbers and it's written in clinical speak and we had no conversation with the geneticist or the doctors. You see this bit of paper and you're reading it, scared for what the future will hold for your child, but I'd love to know like how were you communicated whilst all this is going on, how did you actually find out the next steps or any kind of future guidance. Lisa: So I think in our case we kept sort of going onto neuromuscular appointments, and I think for probably the first 5 years of my daughter's life I kind of had this very naïve thought that every time we turned up to an appointment it would be ‘the one' and then…   I think it would've been really helpful actually in those initial stages if they had said to us, “Actually, we don't know when this is going to happen, if it's even going to happen, you need to kind of prepare yourself for that.” It sounds fairly obvious to say but you don't know what you don't know. And in some ways we were getting genetic test results back for some really quite horrible things and they would tell us, “Oh it's good news, this mitochondrial disorder hasn't come up,” and so part of you is like, “Yay!” but then another part of you is thinking, “Well if it's not that what is it?” And we've very much kind of danced around and still don't really have an answer to whether it's life-limiting. We know it's potentially life-threatening and we have certain protocols, but even that is tricky. We live in North Yorkshire, and our local hospital are amazing. Every time we go in, if it's anything gastro-related, they say to me, “What's the protocol from Great Ormond Street?” and I say, “We don't have one” (laughs) and that always causes some fun. We try to stay out of hospitals as much as we absolutely can and do what we can at home but, equally, there's a point where, you know, we have to be guided by where we're going with her, with the path, and lots of phone calls backwards and forwards, and then is it going to be a transfer down to Great Ormond Street to manage it. And actually the way I found out that nothing had been found from 100,000 Genomes was in a passing conversation when we had been transferred down to Great Ormond Street and we'd been an inpatient for about 6 weeks and the geneticist said to me, “So obviously with you not having a diagnosis from the 100,000 Genomes…” and I said, “Sorry?  Sorry, what was that?  You've had the information back?”  And she said, “Well, yes, did nobody write to you?” and I said, “No, and clearly by my shock and surprise.” And she was a bit taken aback by that, but it happened yet again 2 years later (laughs) when she said, “Well you know everything's been reanalysed” and I said, “No.”  (Laughs)  And, so that's very much, it still feels an awful lot like I'm doing the heavy lifting because we're under lots of different teams and even when they're working at the same hospital they don't talk to each other. And I do understand that they're specialists within their own right, but nobody is really looking at my daughter holistically, and there are things that kind of interrelate across.    And at one of the talks I attended this morning they were talking about the importance of quality of life, and I think that is something that has to be so much more focused on because it's hard enough living without a diagnosis, but when you're living with a bunch of symptoms that, I think the best way I can describe it is at the moment we've got the spokes of the umbrella but we don't have the wrapper, and we don't know where we're going with it. We can't answer her questions, we can't even necessarily know that we're using the most effective treatments and therapies for her, and she's frustrated by that now, being 16, in her own right, as well as we are. And I'm panicking about the navigation towards Adult Services as well because at the minute at least we have a clinical lead in our amazing local paediatrician but of course once we hit and move into that we won't even have him and that's a really scary place to be, I think. Adam: Jo, is there anything you wanted to add on that in terms of how you've been communicated to whilst all this is going on? Jo: Yeah, so I think part of what makes it difficult is if you're across different hospitals because they're not necessarily going to see the same information. So obviously it was a bit of a different time when I got our results, but I got our results on a virtual appointment with a neurologist in one hospital, in the tertiary hospital, and because he could see the screen because it was the same hospital as genetics, and he said, “Oh you've got this” and then the letter came through later. When I had my next appointment with the neurologist in our primary hospital, or secondary care, whatever it's called, in that hospital, he hadn't seen that, so I'm telling him the results, which isn't ideal, but it happens quite a lot. What I think is quite significant to me is the reaction to that VUS.  I have to give it, the doctors that look after my daughter are brilliant, and I'm not criticising them in any way but their reaction to a VUS is “I'm so grateful for the persistence to get to a diagnosis.” Neurologists are a bit more like “Oh it's a VUS so it might be significant, it might be nothing.” Actually, as a patient, as in a parent, you actually want to know is it significant or not, “Do I look at it or not?” And, I mean, like I said, there were no research papers to look at before anyway until a few months ago so I didn't have anything to look at, but I didn't want to look at it either because you don't want to send yourself off down a path. But I think that collective sort of idea that once someone gets a VUS we need a pathway for it, “What do we do with it, what expectation do we set the patients up with and what is the pathway for actually researching further?” because this is where we really need the research. Adam:  Thank you, Jo. So, Emma, over to you in terms of how best do you think clinicians can actually support patients at navigating this odyssey and what's the difference between an initial diagnosis and a final diagnosis and how do you then communicate that effectively to the patients and their family?   Emma: So I think a key thing for me, and it's come up just now again, is that you need to remember as a doctor that the things you say at critical times in a patient's or parent's journeys they will remember – they'll remember it word for word even though you won't – and thinking about how to do that in the most sensitive, empathetic, calm, not rushed way is absolutely key.   And there are some difficulties with that when you're in a very high-pressure environment but it is absolutely crucial, that when you are communicating information about test results, when you're talking about doing the test in the first place, you're consenting the family, you're explaining what you're trying to do and those conditions, you balance how much information you give people.    So, you were talking earlier about “So you haven't got this diagnosis, you haven't got that diagnosis,” I often think it's…  We're often testing for numerous different conditions at the same time, I couldn't even list them all to the parents of the children or the patient that I'm testing. It's key to try and provide enough information without overwhelming people with so much information and information on specific conditions you are just thinking about as a potential.  Sometimes very low down your list actually but you can test for them.    Because people go home and they use the internet and they look things up and they get very, very worried about things. So, for me it's trying to provide bite-sized amounts of information, give it the time it deserves, and support people through that journey, tell them honestly what you think the chance of finding a diagnosis is. If you think it's unlikely or you think you know, sharing that information with family is helpful.   Around uncertainty, I find that a particular challenge. So, I think we've moved from a time when we used to, in this country, declare every variant we identified with an uncertain significance. Now, if we remember that we've all got 5 million variants in our genome, we've all got hundreds and hundreds… thousands and thousands, in fact, of variants of uncertain significance in our genetic code. And actually, unless you think a variant of uncertain significance genuinely does have a probability of being the cause of a child's or a patient's condition, sharing that information can be quite harmful to people.    We did a really interesting survey once when we were writing the guidelines for reporting variants of uncertain significance a few years ago. We asked the laboratories about their view of variants of uncertain significance and we asked the clinicians, and the scientists said, “We report variants of uncertain significance because the clinicians want them” and the clinicians said, “If the labs put the variant of uncertain significance on the report it must be important.” And of course, if you're a parent, if the doctor's told you the variant is a variant of uncertain significance of course you think it's important.    So, we should only be sharing that information, in my opinion, if it genuinely does have a high likelihood of being important and there are things that we can do. And taking people through that journey with you, with the degree of likelihood, the additional tests you need to do and explaining to them whether or not you think you will ever clarify that, is really, really key because it's very often that they become the diagnosis for the family.  Did I cover everything you think's important, both of you?  Lisa: I think the one thing I would say is that when you are patient- or parent-facing, the first time that you deliver that news to the parent… you may have delivered that piece of news multiple times and none of us sit there expecting you to kind of be overcome with emotion or anything like that but, in the same way that perhaps you would've had some nerves when, particularly if it was a diagnosis of something that was unpleasant, you know, to hold onto that kind of humanity and humility. Because for those patients and parents hearing that news, that is the only time they're ever hearing that, and the impact of that, and also, they're going on about with their day, you don't know what else they're doing, what they're juggling.    We're not asking you all to be responsible for kind of, you know, parcelling us up and whatnot but the way information is imparted to us is literally that thing we are all hanging our hats on, and when we're in this kind of uncertainty, from my personal experience I'm uncomfortable, I like to be able to plan, I'm a planner, I'm a researcher, I like to sort of look it up to the nth degree and that, and sitting in a place without any of that is, it's quite a difficult place to be. And it's not necessarily good news for those parents when a test comes back negative, because if it's not that then what is it, and that also leaves you feeling floundering and very isolated at times.  Adam: Yeah, and you touched upon the danger of like giving too much information or pushing families down a particular route, and then you have to pull them out of it when it's not that.   You talked about the experience you had, you felt like you'd found your home and then it's like, “Well, no, no, sorry, actually we don't think it's that.” And you've invested all of your time and your emotion into being part of that group and then you're kind of taken away again. So it's to the point where you have to be really sure before you then communicate to the families, and obviously in the meantime the families are like, “We just need to know something, we need to know,” and it's that real fine line, isn't it?    But, Jamie, over to you. Just thinking about the evolving nature of genomic diagnosis, what role does research play in refining or confirming a diagnosis over time?  Jamie: So it's really, really difficult actually to be able to kind of pinpoint one or 2 things that we could do as a community of researchers to help that journey, but perhaps I could reflect on a couple of things that I've seen happen over time which we think will improve things. And one of that's going back to the discussion that we've just had about how we classify genetic variants. And so, behind that kind of variant of uncertain significance there is a huge amount of effort and emotion from a scientist's side as well because I think many of the scientists, if not all, realise what impact that's going to have on the families.   And what we've tried to do as a community is to make sure that we are reproducible, and if you were to have your data analysed in the North West of England versus the South West that actually you'd come out with the same answer. And in order to do that we need guidance, we need recommendations, we need things that assist the scientists to actually classify those variants.  And so, what we have at the moment is a 5 point scale which ranges from benign to likely benign, variant of uncertain significance, unlikely pathogenic variant and pathogenic variant. It's objective as to how we classify a variant into one of those groups and so it's not just a gut feeling from a scientist, it's kind of recordable measurable evidence that they can provide to assist that classification.   So in many instances what that does is provide some uncertainty, as we've just heard, because it falls into that zone of variant of uncertain significance but what that also does is provide a framework in which we can generate more evidence to be able to classify it in one direction or another to become likely pathogenic or to become likely benign. And as a research community we're equipped with that understanding –– and not always with the tools but that's a developing area – to be able to do more about it.   What that doesn't mean is that if we generate that evidence that it can translate back into the clinic, and actually that's perhaps an area that we should discuss more. But kind of just generating that evidence isn't always enough and being able to have those routes to be able to translate back that into the hands of the clinicians, the clinical scientists, etc, is another challenge. Adam:  And how do you think we can drive progress in research to deliver these answers faster, to really try and shorten those diagnostic journeys, like what are the recommendations that you would say there? Jamie:  So being able to use the Genomics England data that's in the National Genomic Reference Library, as well as kind of other resources, has really transformed what we can do as researchers because it enables teams across the UK, across the world to work with data that otherwise they wouldn't be able to work with.   Behind that there's an infrastructure where if researchers find something which they think is of interest that can be reported back, it can be curated and analysed by teams at Genomics England and, where appropriate, kind of transferred to the clinical teams that have referred that family. And so having that pathway is great but there's still more that we can do about this. You know, it's reliant on things going through a very kind of fixed system and making sure that clinicians don't lose contact with families – you know, people move, they move locations, etc. And so, I think a lot of it is logistical and making sure that the right information can get to the right people, but it all falls under this kind of umbrella of being able to translate those research findings, where appropriate, into clinical reporting.   Adam:  Thank you. And, Emma, is there anything you would add in terms of like any key challenges that you think need to be overcome just to try and shorten the journeys as much as possible and find the answers to get a diagnosis?  Emma: I think trying to bridge that gap between some of the new technologies and new approaches that we've got that we can access in a research context and bringing those into diagnostics is a key area to try to reduce that diagnostic odyssey, so I really want to see the NHS continuing to support those sorts of initiatives.   We're very lucky, as Jamie said, the National Genomic Research Library has been fundamental for being able to reduce the diagnostic odyssey for large numbers of patients, not just in this country but around the world, and so trying to kind of look at how we might add additional data into the NGRL, use other research opportunities that we have in a more synergistic way with diagnostics I think is probably key to being able to do that.    We are very lucky in this country with the infrastructure that we've got and the fact that everything is so joined up. We're able to provide different opportunities in genomics for patients with rare conditions that aren't so available elsewhere in the world.  Adam: Great, thank you. I think we're it for time, so thank you very much to the panel. And I'd just say that if you do have any further questions for ourselves as participants then we're only too happy to pick those up. Thank you for lasting with us ‘til the end of the day and hope to see you soon.  -- Sharon: A huge thank you to our panel, Adam Clatworthy, Emma Baple, Jo Wright, Lisa Beaton and Jamie Ellingford, for sharing their insights and experiences. Each year at the summit, the Behind the Genes stage hosts podcast style conversations, bringing together researchers, clinicians and participants to discuss key topics in genomics.  If you're interested in attending a future Genomics England Research Summit, keep an eye out on our socials. If you'd like to hear more conversations like this, please like and subscribe to Behind the Genes on your favourite podcast app. Thank you for listening.    I've been your host, Sharon Jones. The podcast was edited by Bill Griffin at Ventoux Digital and produced by Deanna Barac.

Playlist: HalfCut, Cole The God - Thunder RumbleAquakultre, featuring Trobiz - Africvillean FunkLen Bowen - Gotta BelieveBJ The Chicago Kid - Turnin' Me UpOlympia Vitalis - CurlsAquakultre - What Are You Sayin'SAULT - WildfiresStro Elliot - Soul II StroSmoove & Turrell - Glue Flag BagsTiwayo - Up For SoulGreyboy, featuring Quantic, Sharon Jones, Paul Nice - Got to Be a Love (Paul Nice Remix)Jeff Parker, featuring Ruby Park - Build a NestKarate Boogaloo - Tremendous FantasticLos Yesterdays - Nobody's ClownThe War and the Treaty - Til the Morning

In this special end-of-year episode of Behind the Genes, host Sharon Jones is joined by Dr Rich Scott, Chief Executive Officer of Genomics England, to reflect on the past year at Genomics England, and to look ahead to what the future holds.  Together, they revisit standout conversations from across the year, exploring how genomics is increasingly embedded in national health strategy, from the NHS 10-Year Health Plan to the government's ambitions for the UK life sciences sector. Rich reflects on the real-world impact of research, including thousands of diagnoses returned to the NHS, progress in cancer and rare condition research, and the growing momentum of the Generation Study, which is exploring whether whole genome sequencing could be offered routinely at birth.  This episode offers a thoughtful reflection on how partnership, innovation, and public trust are shaping the future of genomic healthcare in the UK and why the years ahead promise to be even more exciting.  Below are the links to the podcasts mentioned in this episode, in order of appearance:  How are families and hospitals bringing the Generation Study to life? How can cross-sector collaborations drive responsible use of AI for genomic innovation? How can we enable ethical and inclusive research to thrive? How can parental insights transform care for rare genetic conditions? How can we unlock the potential of large-scale health datasets? Can patient collaboration shape the future of therapies for rare conditions? https://www.genomicsengland.co.uk/podcasts/what-can-we-learn-from-the-generation-study “There is this view set out there where as many as half of all health interactions by 2035 could be informed by genomics or other similar advanced analytics, and we think that is a really ambitious challenge, but also a really exciting one.”  You can download the transcript, or read it below. Sharon: Hello, and welcome to Behind the Genes.   Rich: This is about improving health outcomes, but it's also part of a broader benefit to the country because the UK is recognised already as a great place from a genomics perspective. We think playing our role in that won't just bring the health benefits, it also will secure the country's position as the best place in the world to discover, prove, and where proven roll out benefit from genomic innovations and we think it's so exciting to be part of that team effort.  Sharon: I'm Sharon Jones, and today I'll be joined by Rich Scott, Chief Executive Officer at Genomics England for this end of year special. We'll be reflecting on some of the conversations from this year's episodes, and Rich will be sharing his insights and thoughts for the year ahead. If you enjoyed this episode, we'd love your support, so please subscribe, rate, and share on your favourite podcast app. So, let's get started.  Thanks for joining me today, Rich. How are you?  Rich: Great, it's really good to be here.   Sharon: It's been a really exciting year for Genomics England. Can you tell us a bit about what's going on?  Rich: Yeah, it's been a really busy year, and we'll dive into a few bits of the components we've been working on really hard. One really big theme for us is it's been really fantastic to see genomics at the heart of the government's thinking. As we'll hear later, genomics is at the centre of the new NHS 10-year health plan, and the government's life sciences sector plan is really ambitious in terms of thinking about how genomics could play a role in routine everyday support of healthcare for many people across the population in the future and it shows a real continued commitment to support the building of the right infrastructure, generating the right evidence to inform that, and to do that in dialogue with the public and patients, and it's great to see us as a key part of that.  It's also been a really great year as we've been getting on with the various programmes that we've got, so our continued support of the NHS and our work with researchers accessing the National Genomic Research Library. It's so wonderful to see the continued stream of diagnoses and actionable findings going back to the NHS. It's been a really exciting year in terms of research, publications. In cancer, some really exciting publications on, for example, breast cancer and clinical trials. Really good partnership work with some industry partners, really supporting their work. For me, one of the figures we are always really pleased to see go up with time is the number of diagnoses that we can return thanks to research that's ongoing in the research library, so now we've just passed 5,000 diagnostic discoveries having gone back to the NHS, it really helps explain for me how working both with clinical care and with research and linking them really comes to life and why it's so vital.   And then, with our programmes, it's been great to see the Generation Study making good progress. So, working with people across the country, more than 25,000 families now recruited to the study, and we're beginning to hear about their experiences, including some of the families who've received findings from the programme. It's really nice to see and hear from Freddie's family, who talked to the press a bit about the finding that they received. Freddie was at increased risk of a rare eye cancer, and really pleasingly, it was possible to detect that early through the screening that was put in place. Again, it really brings to life why we're doing this, to make a difference and improve health outcomes.  Sharon: That's an incredible 12 months. Diving into that Generation Study piece and for listeners who don't know what that is, it's a research study in partnership with the NHS that aims to sequence the genomes of 100,000 newborn babies. On an episode from earlier in the year, we had mum, Rachel Peck, join the conversation, whose baby Amber is enrolled on a study. Let's year from Rachel now.  Rachel: From the parents' point of view, I guess that's the hardest thing to consent for in terms of you having to make a decision on behalf of your unborn child. But I think why we thought that was worthwhile was that could potentially benefit Amber personally herself or if not, there's the potential it could benefit other children.  Sharon: Consent has been such a big area of focus for us, Rich, and Rachel touches on that complexity, you know, making a decision on behalf of her unborn child. Can you talk a bit about our approach to consent in the Generation Study and what's evolving in that model?  Rich: Yeah. It's been for the whole study, really, starting out asking a really big question here, what we're aiming to do is generate evidence on whether and if so, how whole genome sequencing should be offered routinely at birth, and that's responding to a really ill need that we know that each year thousands of babies are born in the UK with treatable rare conditions. We will also need to see if whole genome sequencing can make a difference for those families, but we realise to do that, as with all screening, that involves testing more people than are going to benefit from it directly themselves. So, you have to approach it really sensitively. There's lots of complicated questions, lots of nuance in the study overall. One of them is thinking really carefully about that consent process so that families can understand the choices, they can understand the benefits and risks. This is still a research study. We're looking to understand whether we should offer this routinely. It's not part of routine care at this point. The evidence will help decision-makers, policymakers in the future decide that.  At the beginning of the programme, we spent a lot of time talking to families, talking to health professionals who understand the sorts of decisions that people are making at that time of life, but also are experts in helping think about how you balance that communication. That involved, as I say, a lot of conversations. We learnt a lot, lots of it practical stuff, about the stage of pregnancy that people are at when we first talk to them about the study, so that people aren't hurried and make this decision. What we've learnt in the study, right from the outset, is talking to people from midway through the pregnancy so that they really have time to engage in it and think about their choice. So, it's an important part of getting the study design right so that we run the study right. It's also a really crucial element of the evidence that will generate from the study so that we can understand if this is something that's adopted, how should we communicate about it to families. What would they want to know? What's the right level of information and how do we make that accessible in a way that is meaningful to people from different backgrounds, with different levels of interest, different accessibility in terms of digital and reading and so on. There's a lot that we've learnt along the way and there's a lot that we're still learning. And as I say, important things that we'll present as evidence later on.  Sharon: Thank you. It's fascinating there are so many moving parts and a lot to consider when you're building the design of a programme like this or study like this.  Earlier in the year you had a great conversation with Karim Beguir about the developments of AI in genomics. Let's revisit that moment.  Karim: We live in an extraordinary time. I want to emphasise the potential of scientific discovery in the next two or three years. AI is going to move, let's say, digital style technologies like coding and math towards more like science and biology. In particular, genomics is going to be a fascinating area in terms of potential.  Sharon: So, Karim talks about AI moving from maths and coding into biology. Why is genomics such a natural area for AI?  Rich: It's really fascinating. I think it links a lot to how we think about genomics and how you get the most value in terms of health benefit and sort of the progress that we can see could come through genomics more generally. So, your genome, which is your DNA code, written in 3 billion little letters across each one of us, one copied from mum, one copied from dad, even just our genomic code of one person is a large amount of data. That is just part of the story because we're not just interested in DNA for DNA's sake, this is about thinking about health and how we can improve health outcomes. So, it's also thinking about the other sorts of information that needs to link to genomic data to make a difference. Whether that's just to provide routine healthcare with today's knowledge, or whether it's about continuing to learn and discover.  As I mentioned at the beginning, I think a really important part of this whole picture is we've learnt a lot in the last 20/30/40 plus years about genomics. It's incredible how much progress has been made, and we're really just scratching the surface. Take rare disease and the progress that's been made there, it's wonderful how many more families we're able to help today. We know that many thousands of families we still can't find a diagnosis for when we know that there is one there for many of them. That theme of ongoing learning is at the centre of all of our work, and that will continue as we look about broader uses of genomics in other settings beyond rare conditions and cancer. It's also that ongoing learning, but also the amount of, at the moment, manual steps that are required in some of the processes that we need to, for example, find a diagnosis for someone or to make sure the tools that we use are the most up to date, the most up to date with the medical literature, for example. AI is a tool that we're, as the whole of the society, we're beginning to see how it can play a role. We see it as important today for some of the just really practical things. I mentioned it, staying up to date with the medical literature, making sure that we and our systems are aware of all of the knowledge that's coming in from around the world. It's got real potential there.  I think the biggest bottom line here is that it's got the potential to be a really important tool in terms of our ongoing learning and improvement. I'm a doctor by background, the human intelligence alone is fantastic, it's moved us a long way, but we know it also has tremendous blind spots. AI has the potential to complement us there. I guess another thing to really call out here, AI isn't a panacea, it's not suddenly going to answer all of the questions. And, just like human intelligence, it will have its own biases, have its own strong points, and less strong points.  One of the things we're really committed to is working with people like Karim, and many others, to understand where AI could make a difference, to test it, to generate evidence on how well it works and an understanding in all sorts of ways about how that might play out. And, make sure that as AI becomes a tool, that we in genomics, but also in other areas, we understand its strong points and where we need to be more careful and cautious with it. That's a really important part of what we're going to be doing in the coming years here, is making sure that we can maximise the impact of it, but also be confident, so that we can explain to people whose data we might use it on how we're doing it and what it's bringing.  Sharon: Thanks Rich. It's definitely a fast-moving conversation of which we really want to be part of. One of the things that's come up again and again this year is participation and co-production. Let's hear quote that really captures that.  Bobbie: In an earlier conversation with Paul, which you might find surprising that it's stuck with me so much, he used the word ‘extractive'. He said that he'd been involved in research before and looking back on it, he had felt at times it could be a little bit extractive. You come in, you ask questions, you take the data away and analyse it, and it might only be by chance that the participants ever know what became of things next. One of the real principles of this project was always going to be co-production and true collaboration with our participants.  Sharon: That was Professor Bobbie Farsides talking about moving away from extractive research towards true co-production. How are we making that shift in practice here at Genomics England?  Rich: It's a great question. It's one of the areas where I think we've learnt most as an organisation over the years about how really engaging from the beginning with potential participants in programmes, participants who join our programmes, people who are involved in delivering our programmes and healthcare is so important at the beginning. I mentioned earlier the work to think about the consent process for the Generation Study, and that's one of the areas where I think from our first programme, 100,000 Genomes Project, we learnt a lot about how to do that well, some of the pitfalls, some of the bits that are most challenging. And really, right from the start of our programmes, making sure that people who will potentially benefit from the programmes, potentially join them, can be part of that engagement process, and really part of the design and the shaping of the research questions, the parameters around research, but also the materials and how people will engage with them. And that's one of the key capabilities we have internally as an organisation, so we work with partners externally, but also it's a really key part of the team that we have at Genomics England.  Sharon: So, whilst Bobbie talked about moving away from research that can feel one-sided and towards true collaboration, in another episode, Lindsay, a parent of a child with a rare condition, reflected on what that change really means for families and how it's empowering to see their voices and experiences shaping future treatments.  Lindsay: Historically, there's been a significant absence of a patient voice in rare disease research and development. And knowing that that's changing, I think that's really empowering for families. To know that professionals and industry are actually listening to our stories and our needs and really trying to understand, that offers much greater impact on the care and treatments of patients in the future.  Sharon: So, what role do you see participants as partners in shaping the next phase of Genomics England's work?  Rich: So, as you probably detected from my last answer, we see it as absolutely vital. One of the really exciting things here at Genomics England, we've had a participant panel from very early in our life as an organisation. That's one really important route to us at the heart of our organisation, part of our governance, making sure that participants representing all sorts of parts of our programme, but rare conditions being a really large focus for us. And I think, what's so striking as someone with a medical and a research background can see how I think historically medics and researchers have sometimes not known, sort of maybe been a bit scared about knowing how to involve participants from the outset. Often, because they're worried that they might ask the wrong questions in the wrong way, they just don't have the tools.   One of the things I often say now to people we work with is one of the most empowering and positive experiences we have at Genomics England is the power of our participants helping to, right from the beginning, shape what the questions are that we should be asking. Realise some of the challenges that you can't possibly, if you're not in their shoes, understand are the most important to really shape how we prioritise our work internally, the problems that we need to solve first, how we think about some of the practical impacts on people's lives that, again, without hearing from their voice you just wouldn't know. And again, to help our researchers, people accessing data in the National Genomic Research Library, helping them make sure that they involve participants in their work and the confidence and tools to do that.  Sharon: That's great, thank you. Another big theme this year has been collaboration across the NHS, academia, and industry. Dr Raghib Ali puts this really well.  Raghib: There are areas where academia and the NHS are very strong, and there are areas where industry is very strong, and why working together, as we saw, you know, very good examples during the pandemic with the vaccine and diagnostic tests, etc., a collaboration between the NHS, academia, and industry leads to much more rapid and wider benefits for our patients and, hopefully, in the future for the population as a whole in terms of early detection and prevention of disease.  Sharon: So, how does collaboration fit into the 10-year health plan and what's next for 2026 in that space, Rich?  Rich: I think one of the most enjoyable parts of my role at Genomics England and our role as an organisation is the fact that we see ourselves very much as part of a, sort of team across the UK and in fact internationally in terms of delivering on the potential we see for genomics. So, we have a vision as an organisation, which has been the same the last 5 or so years, which is a world where everyone can benefit from genomic healthcare. In fact, that vision is now shared by the NHS from a genomics perspective, and really demonstrably, the 2 parts of the system absolutely pointing in the same direction. And when we've been thinking, looking forward with that 10-year lens on it, what we always like to do, and I think it's a real privilege to be able to do, because we're here in the UK, because we have a National Health Service, because there's been that long-term commitment from government on genomics and really taking a long-term investment view there, and because of so many other parts of the ecosystem, other experts who access data in the National Genomic Research Library, research organisations like Our Future Health, UK Biobank, all teaming together, and the expertise that's there in genomics more broadly. So we've, if you like, worked back from what the UK could do as whole, and in the 10-year health plan, as I said earlier, genomics is at the heart of that.  There's a double helix on the front cover and, in fact, on the watermark on almost every page. And, there's this view set out there where as many as half of all health interactions by 2035 could be informed by genomics or other similar advanced analytics. And we think that that's a really ambitious challenge. We see a really important role for us, as Genomics England, in contributing to that, but it's very much a team effort. Our role is around where we have the biggest capabilities, so around building and running digital infrastructure at a national scale for healthcare delivery and for research, to building evidence to inform future policies, so running programmes like the Generation Study to inform future policy. And really, as part of that, that evidence piece, being driven by engagement, ethics, and work on equity, to really make sure that evidence that future policy can be built on is informed by a fully rounded view. We think if we do that right that we could as a country with others, the NHS, research organisations, many others could live up to that ambition that's set out there in the 10-year plan.   And the 10-year plan is really clear, and government is really clear that this is about improving health outcomes. But it's also part of a broader benefit to the country because the UK is recognised already as a great place from a genomics perspective. We think playing our role in that won't just bring the health benefits, it also will secure the country's position as the best place in the world to discover, prove and where proven role out benefit from genomic innovations. And we think it's so exciting to be part of that team effort.  Sharon: So, Genomics England's refreshed mission and direction of travel is really setting out how we move from research to routine care, and how we embed genomics across the health system. Carlo Rinaldi captured the idea perfectly, imagining a future where diagnosis and hope arrive hand in hand.  Carlo: My dream is that in five to ten years' time an individual with a rare disease is identified in the clinic, perhaps even before symptoms have manifested. At that exact time the day of the diagnosis becomes also a day of hope, in a way, where immediately the researcher, the genetic labs, flags that specific variant, that specific mutation. We know exactly which is the best genetic therapy to go after.   Sharon: And Rich, what are your thoughts on that?  Rich: I think Carlo captures it really well. And for us, I think a really big theme is for that potential for genomics to make a difference, a continued and in fact increased difference for people with rare conditions and cancer, areas where it's already making a difference, but also with the potential to make a much broader impact for people across the population. The real theme is embedding genomics into routine care, making it something that you don't need to know that you're seeing an expert in genomics to benefit from it, really make sure that those benefits can be felt as just part of routine care. It's not something separate where we recognise that the best healthcare is healthcare that's supported by all sorts of inputs, with genomics being a key part of that, and that we can continue to learn as we do that. So that with people's consent, with their understanding of how their data is being used, we know that if we don't have the best answer for them today, we give the best answer we can today, and we can continue to learn, and they can benefit from that in the future.   I'm a rare disease doctor by background, and one of the really most enjoyable parts of my job is seeing that come to practice. In the last year or so I've had a number of families where I've been seeing the family for years, and a researcher accessing data in the National Genomic Research library has found an answer that we've not been able to find for maybe their child's whole life, and then finally we're able to feed it back. Seeing that come to life is just so wonderful, and I think gives us a bit of a blueprint for how things could work more generally.  Sharon: That's great. I mean, what a feeling for those families who do get those answers. As we look ahead to 2026 and beyond, the conversation is starting to include prevention, using genomics not just to diagnose conditions but to predict and treat and even prevent them. Alice Tuff-Lacey summarised this nicely in an episode about Generation Study.  Alice: This is quite an exciting shift in how we use whole genome sequencing, because what we're talking about is using it in a much more preventative way. Traditionally where we've been using it is diagnostically where we know someone's sick and they've got symptoms of rare condition, and we're looking to see what they might have. What we're actually talking about is screening babies from birth using their genome to see if they're at risk of a particular condition. And what this means is this raises quite a lot of complex ethical, operational, and scientific and clinical questions.  Sharon: Rich, when you think about 2026, what's your biggest hope for where we'll be this time next year?  Rich: I think it's a really exciting time. As you can tell from how we've been speaking, I'm really excited about the direction of travel and how over the next 5 and 10 years we can really make a transformational shift because of how well placed we are in the UK from a genomics perspective. Where we are with today's knowledge, where we could be because of the continued government and NHS commitment to genomics being at the heart of this, if we build the right infrastructure, if we generate the right evidence to inform what's adopted, I think we're in a really exciting place.  From a 2026 perspective, I think what we're really committed to is continuing to do the work, the day-by-day-by-day work that is to build that incrementally. So, a really big focus for us is continuing to support the NHS and making sure researchers can access data, so that flow of answers for families can continue and grow, accelerate, to continue delivering the Generation Study because it's a really important part of that wider jigsaw to generate the evidence that can inform future policy on whether this is something that's adopted and offered routinely to every child when they're born.  I think a really important time now that the government's provided the opportunity for us as a team, as a UK genomics and life sciences ecosystem, is to really put in place some of the next steps, the building blocks that can take us towards that 10-year vision. So for us also, a really important part of the year is beginning the design process for an adult population genomics programme, where we're looking at what evidence it's important that we can provide that's complementary to different work around by others in the ecosystem that needs to be there if we're going to think about that potential broader use of genomics.  Sharon: That's great. It sounds like another exciting year ahead. So, we're going to wrap up there. Thank you to Rich Scott for sharing your reflections on the key milestones this year, and for your thoughts on the year ahead. Thanks, Rich.  Rich: Thanks very much for having me.  Sharon: If you enjoyed today's episode, we'd love your support, so please subscribe, share, and rate us on wherever you listen to your podcasts. I've been your host, Sharon Jones. This podcast was produced by Deanna Barac and edited by Bill Griffin at Ventoux Digital. Thank you for listening. 

1.  The Raveonettes - The Christmas Song.  2.  My Morning Jacket - Please Come Home for Christmas   3.  Kelly Finnigan - The Miracle Is Here 4.  Johnny Goth - Black Christmas.  5.  Patti Smith - We Three Kings.  6.  Low - Little Drummer Boy.  7.  Sharon Van Etten - Silent Night.  8.  Pale Blue - Just Like Christmas.  9.  Otis Redding - White Christmas.  10.  William Bell - Everyday Will Be Like A Holiday 11.  Charles Bradley - Every Day Is Christmas (When I'm Lovin' You) 12.  Sharon Jones & The Dap-Kings - Ain't No Chimneys in the Projects 13. Sinéad O'Connor - Silent Night - Long Version.  14.  The Raveonettes - SNOWSTORM.  15.  Iggy Pop - White Christmas.  16.  Reindeer Tribe - O Come O Come Emmanuel.  17.  The Shacks - Christmas Time Is Here.  18.  Beach House - I Do Not Care for the Winter Sun.  19.  Future Islands - Last Christmas   20.  Black Marble - All I Want for Christmas Is You.  21.  LCD Soundsystem - christmas will break your heart.  22.  Death Hags - Xmas on Your Own.  23.  Kadhja Bonet - Wonderful Christmas Time   24.  Reindeer Tribe - Have Yourself A Merry Little Christmas.  25.  Smokey Robinson & The Miracles - Christmas Every Day.  26.  King Hannah - Blue Christmas.  27.  Broadcast - Winter Now.  28.  Otis Redding - Merry Christmas Baby. 

PTF is back with you to wish a Merry Christmas from his family to yours It's Beginning to Look A Lot Like Christmas - Perry ComoWe Need A Little Christmas - Angela LansburyLet It Snow - Dean MartinGotta Love Being a Kid -- Ol' 97s Made with Love by Melissa CarperChristmas Time's a Comin by Bill MonroeSanta Looked a Lot Like Daddy by Buck OwensChristmas Must Be Tonight by Jeff TweedySilent Night by Tanner Bingaman's Pretty Big Garden(for more from Tanner, go to tannerbingaman.com) The Bells of St. Mary's by The DriftersJoy, Joy to My Soul by The Soul Stirrers (feat. Sam Cooke)Jingle Jangle by The PenguinsCan This Be Christmas? by The FalconsWhite Christmas by The Drifters Angels We Have Heard on High by Sixpence None the RicherSilver Bells by Sharon Jones and the Dap KingsRed Bows for a Blue Girl by J.D. McPhersonIs This Christmas? by The WombatsLast Christmas by Slaves Merry Christmas Everybody by Slade

As broadcast @ www.totallywiredradio.com Tuesday 23.12.25Hour One and Two with Ket Shah01. Georgie Sweet ft Amanda Whiting - It's Christmas (As Long As You're Here) (First Word 2025)02. Bee Boy$oul ft Hayden - If You're Not Here (It's Not Christmas) (SRG-ILS 2025)03. Aphrose - The Other 364 (LRK 2025)04. Kenny Lattimore & Shanice Wilson - Love at Christmas Time (Kingsbrook 2025)05. October London - Naughty List (Death Row 2025)06. Heidi Tann - Spread The Love This Christmas (Self Released 2025)07. Sensere ft Adolphus Scottie Scott - Joy And Peace (Wrightsound M&E 2025)08. James Day & Lil' John Roberts Band ft Frank McComb & Sheléa & U-Nam - Celebrate Our Love (King / Kyba 2025)09. EMI Secrest - Christmas Time (Ahi Nama 2025)10. Ruth Harley - Christmas Is (Tramp 2022)11. Sharon Jones & The Dap-Kings - Aint No Chimneys In The Projects (Daptone 2015)12. Kelly Finnigan - I Cant Wait For Christmas Time (Colemine 2025)13. Galliano - Unreliable Memories Of Contested Conversations (Brownswood 2025)14. Stargazers - Loempia (Night Dreamer 2025)15. Emile And The Education - Willis And Annie (Emile Martinez 2025)16. Kylie Auldist ft Thndo - Close to You (Self Released 2025)17. Sheree Brown - Thinkin' (Expansion 2025)18. The Whispers - We Need You (Kingdom 2025)19. Kaigo ft Danny Losito & Gianluca Mosole - Number (Self Released 2025)20. Herbert & Momoko - Babystar (Momoko Gill Remix) (Strut Records 2025)21. Evelyn Champagne King - A Whole Lotta Yum Yum (Georgie B Remix) (Expansion 2025)22. Tema Due Ft Lalin St Juste - La Danse De L'esprit (Schema 2025)23. Louie Vega ft Anane & Tony Touch - Last Night A DJ Saved My Life (Extended Version) (Nervous 2025)24. DJ Ryte Nou, Marcus Harris & Venessa Jackson - Have Some Fun (Extended Instrumental) (Bedfunk 2025)25. Kayenne - Bliss They Call It Love (Dj Spen & Michele Chiavarini Blissful Music Mix) (NDATL Muzik 2025)26. Sonny Chiba ft Lucid Konversations - No More Illusions (Genuinely Blaq Mix) (House 4 Life 2025)27. The 60 Hertz Project - Happy Days (Lars Behrenroth Remix) (Deeper Shades 2025)28. Walter G - Rue Paradis (Extended mix) (Groove Culture 2025)

This week's conversation with Cochemea Gastelum brings our season to a close. The saxophonist and bandleader joins us to discuss his beautiful LP Ancestros Futuros, out now on Daptone Records. Mining his Indigenous roots, soul jazz, and funk, it's a fantastic album, and it completes a trilogy that began with 2019's All My Relations, continued with 2021's Baca Sewa, and now concludes.  Cochemea's resume is lengthy. He worked extensively with the late soul singer Sharon Jones as part of her Dap Kings ensemble and has played with the Budos Band, Antibalas, Robert Walter's 20th Congress, Archie Shepp, Public Enemy, the Roots, David Byrne, and more. Genre-hopping comes naturally to the San Diego-raised saxophonist, but the cultural conversation that occurs on these records is especially unique, and it was a pleasure to have him join us to discuss it.  Transmissions is created in partnership with the Talkhouse Podcast Network. We're brought to you by ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Aquarium Drunkard⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠, an independent music media crew headed by Justin Gage. Over at Aquarium Drunkard, you'll gain access to 20 years of music writing, playlist, essays, mixtapes, radio special, podcasts, videos and more.

IT FEELS LIKE CHRISTMAS, but it sounds like a new episode of Fire and Water Records! Ryan and Neil are back for one more volume of A Very Daly Christmas. The brothers are not just sharing another dozen favorite holiday songs this time, though. They're gifting each other some Secret (Santa) Questions, because apparently that's a requirement on the Fire and Water Podcast Network now. Track list "Santa Claus Go Straight to the Ghetto" by James Brown "Peace On Earth / Little Drummer Boy" by Bing Crosby and David Bowie "8 Days of Hanukkah" by Sharon Jones and the Dap-Kings "old fashioned christmas" by Lyn Lapid "Christmas Alone" by Lola Kirke "DJ Play a Christmas Song" by Cher "If We Make it Through December" by Merle Haggard "Christmas Tree Farm" by Taylor Swift "Cantique de noel" by Andrea Bocelli "River" by Joni Mitchell "It Feels Like Christmas" by the Ghost of Christmas Present "Every Snowflake's Different (Just Like You)" by My Chemical Romance This podcast is a proud member of the FIRE AND WATER PODCAST NETWORK. Visit our WEBSITE: http://fireandwaterpodcast.com/ Like our FACEBOOK page – https://www.facebook.com/FWPodcastNetwork Use our HASHTAG online: #FWPodcasts Subscribe to FIRE AND WATER RECORDS on iTunes: https://podcasts.apple.com/us/podcast/fire-and-water-records/id1458818655 Or subscribe via iTunes as part of the FIRE AND WATER PODCAST: http://itunes.apple.com/podcast/the-fire-and-water-podcast/id463855630 Support FIRE AND WATER RECORDS and the FIRE AND WATER PODCAST NETWORK on Patreon: https://www.patreon.com/fwpodcasts Support FIRE AND WATER RECORDS and the FIRE AND WATER PODCAST NETWORK on Patreon: https://www.patreon.com/fwpodcasts Thanks for listening!

Jewish Minnesotans are condemning a mass shooting in Australia marking the first day of Hanukkah that left 15 people dead. It follows another shooting at Brown University in Rhode Island on Saturday where two students were killed. We'll hear from one local rabbi affected by both tragedies. An MPR News investigation shows Planned Parenthood in Minnesota is facing strife amid staff complaints and financial pressures. We'll hear more about the situation. Plus, we'll meet a Duluth foster parent who's just won an award for her work building connections between foster and birth families. And a food shelf operator talks about how he's responding to an ongoing uptick in demand. Our Minnesota Music Minute was “Happy Hollow” by Pert Near Sandstone and our Song of the Day was “8 Days (of Hanukkah)” by Sharon Jones & the Dap-Kings.

JAMIE CULLUM - “It's Christmas” SARA WATKINS - “The Holidays With You” AGES AND AGES - “We Need A Little Christmas” JOHNNY MERCER, RISE ASHEN - “Winter Wonderland" BROADCAST - “Winter Now” GOOD LOVELIES- “God Rest Ye Merry Gentlemen” DEATHCAB FOR CUTIE - “Christmas (Baby Please Come Home)” LEON BRIDGES NORA JONES - “This Christmas I'm Coming Home” ROLAND GIFT - “Everybody Knows It's Christmas” ROTARY CONNECTION - “Christmas Love” KACEY MUSGRAVES, THE QUEBO SISTERS - “Let It Snow” LYNN ANDERSON - “Mr. Mistleto” CHEEPSKATES - “Christmas With You” TRACEY THORN - “Tinsel And Lights” LOU RAWLS - “Santa Claus Is Coming To Town” NORAH JONES - “Christmas Is Calling” THE FUNK BROTHERS - “Winter Wonderland” INGRID MICHAELSON - “Song For A Winter's Night” BING CROSBY, RANDY EDELMAN - “Happy Holidays” ADAM FAITH - “Lonely Pup (In A Window) THE LONE BELLOW - “Marshallow World” BOB MORRISON - “It's Christmas” SUFJAN STEVENS - “That Was The Worst Christmas Ever” THE BETHS - “Have Yourself Merry Little Christmas” THE SHINS - “Wonderful Christmas Time” RAOL MALO - “I'll Be Home For Christmas” THE FREE DESIGN - “Close Your Mouth (It's Christmas)” BOYZ II MEN - “Silent Night” THE SHA LA DAS - “Sha La Da La La (It's Christmas Time)” THE SILHOUETTES - “Under The Mistletoe" SHARON JONES &  THE DAP KINGS - “Just Another Christmas Song” AIMEE MANN - "Christmas Time” THE VENTURES - “Sleigh Ride”  

PLAYLIST: December 14, 2025Pacific St Blues & AmericanaDonation Link: https://897theriver.com/product/donate/Blues fans, the station needs your help: they need money.If you would, please help 'em out. Make it a happy holiday and Thank-you! Rick 19. Eric Clapton / Merry Christmas Baby 20. Chuck Leavell / Even Santa Gets the Blues 21. Matt Cox / Santa Claus is Coming to Town 22. Joni Mitchell / The River 23. The Beatles / You Never Give Me Your Money 24. Mark Knopfler / Smart Money 25. Robben Ford / For the Love of Money26. Pink Floyd / Money 27. Boz Scaggs (w/ Duane Allman) / Somebody Loan Me a Dime 28. Sebastian Lane / Floating Away 29. John Primer / Crawling Kingsnake (Doors/ John Lee Hooker) 30. Keith Richards / Run Rudolph, Run 31. Chuck Berry / Merry Christmas Baby 32. Sharon Jones & the Dap Kings / Ain't No Chimneys in the Projects33. Nikki Lane / FalalalaLoveya

Playlist: Len Bowen, featuring Ordario, JRDN - Run Away Pt. 2 (Don't Look Back)The Blue - Nobody Told UsOmar - Can we go Out?Shad - The Old Prince Still Lives at HomeJosh Martinez, featuring Moka Only, Skratch Bastid - Underground PopMurs - I'm InnocentDeadringer - Good Times Roll Pt. 2Dinner Party, featuring Terrace Martin, Kamasi Washington, Robert Glasper, 9th Wonder - Freeze TagButcher Brown - Tidal WaveThe Allergies - So RealSoul Mosaic, featuring Paul Nice, Sharon Jones, Quantic - Go To Be a Love - Paul Nice MixLady Wray - You're Gonna WinThee Marloes - Harap Dan RaguAfternoon Bike Ride - Otherworld

In this inspiring interview, autoimmune warrior Sharon Jones opens up about the emotional, physical, and spiritual challenges of living with chronic illness—and why resilience coaching wasn't just helpful, it was life-changing. Sharon shares how she rebuilt her energy, confidence, and daily routines after hitting rock bottom, and what tools helped her thrive again. Whether you're navigating autoimmune symptoms or supporting someone who is, this episode offers practical hope, mindset shifts, and powerful reminders that healing is possible.  Sharon Jones, is a Resilience Life Coach, who helps people, especially women living with autoimmune conditions reclaim their health, purpose, and confidence. She lives with Ankylosing Spondylitis, so she understands firsthand the challenges of chronic pain, disability, and the emotional toll illness can take. After navigating spinal surgery and years of trial and error, She now uses both her lived experience and coaching expertise to guide others toward balance, strength, and hope. Through my program Empowered Pathways and my podcast Thrive With Sharon, she shares practical tools and mindset shifts that show a diagnosis isn't the end of the road, it can be the beginning of a new, empowered chapter. Checkout her website and get a free guide: The 7-Day Resilience Tracker Notice What Triggers You and What Strengthens You- https://www.sjresiliencecoach.com/ Learn more about her story and the stories of others in the book- the Backyard Peace Project- https://amzn.to/3Xc5rit My youtube channel with videos of this podcast and more. https://youtube.com/c/annalaurabrownhealthcoach Request a free foundations of wellness kit: https://forms.gle/jBoGuUSNJebET77B6 Watch my free 3 steps to an autoimmune energy reset: https://annalaurabrown.com/autoimmune-energy-webinar/  

On this week's episode, we look at who is eligible for the first time for next year's class of the Rock & Roll Hall of Fame.For more music history, subscribe to my Spotify Channel or subscribe to the audio version of my music history podcasts, wherever you get your podcasts fromALL MUSIC HISTORY TODAY PODCAST NETWORK LINKS - https://allmylinks.com/musichistorytodayLIST OF ARTISTS WHO ARE ELIGIBLE FOR THE FIRST TIME FOR THE ROCK AND ROLL HALL OF FAME INDUCTION CLASS OF 2026:A Camp, Alicia Keys, As I Lay Dying, Avantasia, Avenged Sevenfold, Bayside, Ben Frost, The Black Dahlia Murder, Black Rebel Motorcycle Club, Blake Shelton, The Blow, Brand New, Breaking Benjamin, British Sea Power, Broken Social Scene, Bubba Sparxxx, Chromatics, Cloud Cult, Comets On Fire, The Constantines, The Coral, Cut Copy, D-Fuse, Dabrye, Damien Rice, Daniel Bedingfield, David Guetta, The Decemberists, Dirty Vegas, Disarmonia Mundi, Dresden Dolls, Dungen, Eclipse, El-P, Ex Models, Finch, Flobots, Fruit Bats, Gemini, Gojira, Gym Class Heroes, Hot Chip, India.Arie, J Dilla, Jack Johnson, Jon Hopkins, Josh Groban, Kaskade, Liars, LP, M83, Mastodon, mewithoutYou, Midlake, Miranda Lambert, Municipal Waste, N.E.R.D., The National, Norah Jones, Orgone, Peter Bjorn and John, PSY, Ray LaMontagne, Reigning Sound, RJD2, Sharon Jones & the Dap-Kings, Shearwater, Showtek, Solar Fields, Starsailor, Stephen Malkmus, The Streets, The Strokes, T.I., Tenacious D, Tiësto, Tim Hecker, Tinariwen, Tomahawk, The Vines, The Walkmen, Will.i.am, The Word, & the Yeah Yeah Yeahs.

This is an excerpt from a patrons episode. To hear the full thing, and dozens more like it, visit Patreon.com/LoveMessagePod and become a patron from £3 a month.In this patrons-only episode Jeremy and Tim revive the long-dormant ‘What We're Listening To' format for an exploration of what's been on their turntables recently. Tim pulls extensively from the bag he packed for a recent Lucky Cloud party, including selections from SAULT and Cotontete, while Jeremy shares a modern slice of Bukem-esque DnB and an end-of-the-night dreamy deep cut. Elsewhere in the show we hear a post-punk Fela cover, a classic piece of Sharon Jones funk soul, Highlife guitar, a shoutout for the humble 7”, Afrofuturist mythology and… Alan Partridge. Tracklist: Miguel ‘Anga' Dias - A Love Supreme Evolução Africa - Liberdade SAULT - Let Me Go Cotonete feat. Leron Thomas - Day In Day Out  Sharon Jones and the Dap Kings - What If We All Stopped Playing Taxes Vital Disorders - Zombie Underground System - 95 South The Earons - Land of Hunger Big Bud - Lucky7 Rubies feat. Feist - I Feel Electric (TieDye Remix)

Jerome presents historical rock, roots and blues events that occurred in the month of November in years gone by. Podcast includes, in order of appearance, tracks by Jerry Lee Lewis, Slim Harpo, Fats Domino, Johnnie Ray, John Lennon, The Who, Rolling Stones, The Band, Milli Vanilli, Link Ray, Robert Johnson, Kokomo Arnold, Mississippi John Hurt, Big Joe Turner, Sharon Jones, Billie Forrester, Carl Perkins, Tampa Red, Bill Haley, Johnny Horton, Eva Cassidy , Sonny Boy Williamson, John Lee Hooker, Carey Bell, Joe Hill Louis, Sylvester Weaver, Howlin Wolf, Nick Drake, Jimi Hendrix Experience, Cream, Pink Floyd. Size: 130 MB (136,790,330 bytes) Duration: 1:11:19

Episode 105 – 15-minute Speed Coaching with Sharon Jones   Welcome to our brand-new episode format – 15-minute Speed Coaching Sessions for Veterinary- and Pet Care Professionals! The rules of the game are as follows: ·         Episodes will be in-the-moment, off-the-cuff and unscripted. ·         Coaching sessions will be 15 Minutes MAXIMUM, so wherever we finish, we finish… ·         Which means that we might not find complete resolution to your question, but we will certainly get the thought process started!   In this episode, I chat to trainer and behaviourist, Sharon Jones, who has questions around managing barrier frustration in urgent situations, where we absolutely need Safety Management strategies in place, such as a baby joining the home or learning to crawl. We are often faced with situations where we need to manage safety but haven't yet got the tools in place to do so or where the dog becomes very frustrated at being confined or no longer being able to access high value areas of the home. Listen as we brainstorm the challenge of managing these cases and come up with a number of tools we could use while conditioning the dog to cope with barriers.   If you'd like to book a 30-minute Vet-Vet or Vet-Pet Care Professional Consultation with me, you can do that right here: https://calendly.com/trinityvet/teams-and-professionals If you can't find an appointment time to suit you, please email us at info@trinityvetbehaviour.com to find a time that suits us both!   If you'd like to learn more about medications that could be useful ion these situations, then have a look at my AMAZING PSYCHOACTIVE course: https://katrin-jahn.mykajabi.com/psychoactive   And… if YOU would like to be part of a 15-Minute Podcast Speed Coaching episode, then apply right here: https://katrin-jahn.mykajabi.com/assessments/2148527544   If you liked this episode of the show, Veterinary Behaviour Chat, please LEAVE A 5-STAR REVIEW, like, share, and subscribe!   Facebook Group: Join The Veterinary Behaviour Community on Facebook   You can CONNECT with me: Website: Visit my website Trinity Veterinary Behaviour Instagram: Follow Trinity Veterinary Behaviour on Instagram Trinity Veterinary Behaviour Facebook: Join us on Trinity Veterinary Behaviour's Facebook page Trinity Veterinary Behaviour YouTube: Subscribe to Trinity Veterinary Behaviour on YouTube LinkedIn Profile: Connect with me on LinkedIn   Thank you for tuning in!

We're playing some of our favorite records that make us sentimental or nostalgic for earlier days in our record collecting lives, as we get closer to a big change at That Driving Beat as Uwe prepares to move to Texas. We've got treasured records from Sharon Jones, Harold Melvin and the Blue Notes, Soul Inc., Henrietta And The Hairdooz, Marlena Shaw, Ray Pollard, Billy Stewart, Jackie Shane, Lou Johnson, Irma Thomas, Chuck Jackson, and more. -Originally broadcast August 3, 2025- Willie Mitchell / That Driving BeatIrene and the Scotts / I'm Stuck On My BabyJackie Wilson / I Get the Sweetest FeelingSharon Jones / I Just Dropped in to See What Condition My Condition Was InTrade Martin / Sixteen TonsHarold Melvin & The Blue Notes / Get Out (And Let Me Cry)Susan Barrett / What's It Gonna BeGail Winters / You've Got The PowerRonnie Love / Chills And FeverGene Pitney / She's a HeartbreakerHenrietta And The Hairdooz / You Got a Lot to LearnSoul Inc. / I Belong to NobodyThe Wildweeds / No Good To CrySoul Inc. / Midnight HourMarlena Shaw / Let's Wade In the WaterRay Pollard / WanderlustR. Dean Taylor / There's a Ghost in My HouseThe Johnny Gibson Trio / BeachcomberBilly Stewart / Secret LoveJackie Shane / In My TenementBaby Washington / A Handful of MemoriesBrice Coefield / TemptedThe Depressions / House of SilverEd Bruce / Don't Let It HappenBobby McClure / Peak Of LoveDolly Parton / Busy SignalPearlean Gray / I Don't Want to CryLou Johnson / UnsatisfiedLou Johnson / If I Never Get To Love YouChuck Woods / Seven Days Too LongTammi Lynn / I'm Gonna Run Away From YouThe Vontastics / Day TripperIrma Thomas / Break-A-WayThe Steinways / You've Been Leadin' Me OnBobby Bland / ShoesChuck Jackson / Somebody NewBaby Washington / Leave Me AloneMarv Johnson / Come On And Stop Hosted on Acast. See acast.com/privacy for more information.

durée : 00:59:39 - La fabrique à bonheur - par : Nathalie Piolé -

Episode 630 also features an E.W. Poetic Piece titled, "We We." Our music this go round is provided by these wonderful artists: Thelonious Monk, the MC5, Joe Strummer, Sharon Jones & the Dap Kings, Branford Marsalis & Terence Blanchard. Commercial Free, Small Batch Radio Crafted in the West Mountains of Northeastern Pennsylvania... Heard All Over The World. Tell Your Friends and Neighbors 

A window on a world with a lovely viewFreight Train - Elizabeth Cotten Doin' Time (Lullaby Mix) - Lana Del ReyDisparate Youth - SantigoldJockey Full Of Bourbon - Los LobosDamn It's Hot (Part 1) - Sharon Jones & The Dap KingsMore Than I Can Stand - Bobby WomackHot In The City - Billy IdolTo Turn You On - Roxy MusicIn The Summertime - Bob DylanEstate - Chet BakerJohn McLaughlin - Miles DavisSweetheart - Milla JovovichYou Can't Put Your Arms Around A Memory - Ronnie Spector (with Joey Ramone)My Name Is - The ShacksMatthew Mark - The MaytalsWill I Get Off Easy - The ExpressionsImperialismo - Artur Nunes e Conjunto MerengueTell Me - James William Guercio feat. Terry KathLove Letters - Elvis Presley

Sharon Jones is founder of Be A Better You and passionate about using feedback to build self-awareness in people so they can be the best professionals they can possibly be. In this episode she shares her insights on the power of building soft skills and advice for HR teams who are looking to make more impact with their leadership development programs.Sharon wrote her book in 2019 – you can find it here:https://a.co/d/cRxkwlXYou can follow Sharon on LinkedIn here:https://www.linkedin.com/in/sharonjonesSee the article she referenced here:https://www.linkedin.com/posts/sharonjones_beabetteryou-alwayslearning-greatmanager-activity-7325855813850341378-2KJoAnd see her website here:http://www.beabetteryou.ca/Don't forget …To sign up for our weekly newsletter foHRsight at http://www.futurefohrward.com/subscribe.Follow us on LinkedIn:Mark - www.linkedin.com/in/markedgarhr/Naomi - www.linkedin.com/in/naomititlemancolla/future foHRward - www.linkedin.com/company/future-fohrward/And on Instagram - www.instagram.com/futurefohrward/Support the show

Support our Show and get the word out by wearin' our gear Playlist: Pacific St Blues & AmericanaApril 27, 2025Like Pacific St Blues? Try our podcast of spotlight showsSpotlights Shows21. Grateful Dead / US Blues 22. Swamp Boy / 100 degrees in the shade 23. Keb Mo & Taj Mahal / She Knows How to Rock Me24. Sharon Jones & the Dap Kings / Moving On 25. The Black Crowes / 99 Pounds26. Free / The Hunter 27. Albert King / Born Under a Bad Sign28. Gary Moore / Oh Pretty Woman 30. Johnny Winter / White Line Fever 31. Mike Zito / Life is Hard 32. Kenny Wayne Shepherd / Saturday Night 33. Eric Clapton / The Border Song 34. Joe Bonamassa / Shake the Ground 35. Danielle Nicole / Fireproof 36. Bonnie Raitt / Used to Rule the World 37. Susan Tedeschi / Can't Leave You Alone What's the Common Thread, The Music Trivia Game

My friend and former collaborator, Kevin Cunningham, joins me this week to discuss early season impressions and our trips to various Giants' affiliates — especially Kevin's recent trip up to Eugene. We talk early season weather and a few injuries, as well as philosophical changes we've picked up in the organization.Kevin puts out great content all over the interwebs, including Instagram, Twitter, Blue Sky and Tik Tok, so look for him under Giant Futures at any of those sites, as well as at his Patreon site of the same name. And, of course, you can get all of my work by becoming a There R Giants' subscriber, to get daily Minor Lines emailed straight to your Inbox.There R Giants is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.Intro/Outro: “Inspiration Information” by Sharon Jones and the Dap-Kings This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit rogermunter.substack.com/subscribe

Ce 14 avril, Marjorie Hache propose sa sélection riche et contrastée, mêlant figures cultes et découvertes. L'émission démarre fort avec Ghost et leur nouveau single "Lachryma", suivi d'un hommage à Gary Numan, pionnier de la synthpop, et son titre emblématique "Are Friends Electric?". Parmi les nouveautés, Lucy Dacus séduit avec "Best Guest", tandis que l'album de la semaine est signé Black Country, New Road. Le morceau "Happy Birthday" y aborde la déconnexion générationnelle dans un style post-punk teinté de pop baroque. Francis Zegut met en avant Kas Produkt et leur cold wave française avec "I Don't Care". La reprise du jour revisite "Wild Horses" des Rolling Stones dans une version soul signée Sharon Jones & The Dap-Kings. La suite de la soirée alterne entre énergie brute - Cage The Elephant, Viagra Boys, System Of A Down - et envolées mélodiques avec CMAT, The Mamas and the Papas, et The Cramps. En fin d'émission, Garbage dévoile un extrait de leur prochain album "Let All That We Imagine Be the Light", et Pogo Car Crash Control revient avec "Comme Toi", fraîcheur noise venue d'Île-de-France. La playlist de l'émission : Ghost - Satanized No One Is Innocent - La Peur Gary Numan - Are 'Friends' Electric Depeche Mode - Little 15 Lucy Dacus - Best Guess Madness - Night Boat To Cairo The Dead Weather - I Cut Like A Buffalo Black Country, New Road - Happy Birthday The Beatles - Twist And Shout Kas Product - I Don't Care David Bowie - Ziggy Stardust Viagra Boys - The Bog Body Sharon Jones & The Dap-Kings - Wild Horses Cage The Elephant - In One Ear System Of A Down - Aerials CMAT - Running Planning The Cure - The Lovecats Late Of The Pier - Heartbeat Sum 41 - Over My Head (Live) Sex Pistols - God Save The Queen Rammstein - Bück Dich Pogo Car Crash Control - Comme Toi Red Hot Chili Peppers - Blood Sugar Sex Magik The Mamas & the Papas - Monday Monday The Cramps - Human Fly Linkin Park - Faint Garbage - There's No Future In Optimism Diamond Head - Am I Evil Distribué par Audiomeans. Visitez audiomeans.fr/politique-de-confidentialite pour plus d'informations.

Send us a textMental health and spirituality don't have to exist in separate worlds. Sharon Jones, licensed marriage and family therapist, joins us to unveil her transformative approach to healing through her book "Uploading the Fire, Downloading the Grace: Contemplative Prayers."Born from personal grief after losing her father, Sharon's collection of contemplative prayers offers a pathway through emotional turmoil when words fail us. "I wanted to help everyone that may be grieving or stuck in a place where they needed healing or help or release," she shares, explaining how prayer creates a sacred space for honest conversation with God without the judgment often experienced when sharing pain with others.Sharon challenges faith communities to move beyond platitudes and embrace their power as "first responders" for those in spiritual and emotional crisis. Her groundbreaking work with churches demonstrates how spiritual settings can incorporate therapeutic techniques while honoring faith principles. "Where it starts is coming out of the mind of being judgmental and not putting a label on it, but administer the care," she explains, emphasizing that true spiritual practice means wrapping love around people when they're suffering.The concept of "uploading fire and downloading grace" provides a powerful framework for spiritual resilience—cultivating daily moments of divine connection builds inner strength, while grace represents the unmerited favor and support available even in our darkest hours. This conversation will transform how you approach both prayer and mental wellbeing.Join our Facebook group "Koffee Chit Chat" to continue the conversation during our seasonal break, and follow our journey on Instagram. Sharon welcomes connections through her Facebook pages "Alabaster Moments" and "Alabaster Spirit."Support the showHey y'all hey, don't miss the next episode of Koffee Chitchat!!

Our card this week is Sharon Jones, the 10 of Spades from Florida. The last known people to see Sharon Jones alive around Thanksgiving weekend in 1987 have something in common. They all attended the same apartment party. And when the young woman showed up dead several days later…stories started swirling about what actually went down that night. More than 37 years later, her family's still hearing remnants of these rumors…rumors they're hoping someone out there can help them put to rest once and for all…If you know anything about the murder of Sharon Jones in Naples, Florida in 1987, we hope you'll come forward for this family. You can remain anonymous by submitting a tip through Southwest Florida Crime Stoppers online or by calling them at 1-800-780-8477.Additional ways to contact Naples Police directly:Napes Police Department AppNumber for Naples Police Department: (239) 213-3000Lieutenant Robert Young's Desk Line: (239) 213-4823Email for Naples Police Department: police@naplesgov.comLieutenant Robert Young's Email: ryoung@naplesgov.com View source material and photos for this episode at: thedeckpodcast.com/sharon-jones Let us deal you in… follow The Deck on social media.Instagram: @thedeckpodcast | @audiochuckTwitter: @thedeckpodcast_ | @audiochuckFacebook: /TheDeckPodcast | /audiochuckllcTo support Season of Justice and learn more, please visit seasonofjustice.org.The Deck is hosted by Ashley Flowers. Instagram: @ashleyflowersTikTok: @ashleyflowerscrimejunkieTwitter: @Ash_FlowersFacebook: /AshleyFlowers.AF Text Ashley at 317-733-7485 to talk all things true crime, get behind the scenes updates, and more!

PLAYLIST 12/22/2024Pacific St Blues & AmericanaCelebrating ChristmasSupport our Show and get the word out by wearin' our gear 1. Mabel Scott / Boogie Woogie Santa Claus2. Louis Jordan / Santa Claus, Santa Claus3. Lester Williams / Wintertime Blues 4. Big Joe Turner / Christmas Date Blues 5. The Swan Silvertones / Go Tell It on the Mountain 6. Elvis Presley / (There'll be) Peace in the Valley 7. Keb Mo / Better Everyday 8. Dean Martin / It Won't Cool Off 9. Duke Robbliard / Duke's Christmas 10. Fats Domino / I'll Be Home for Christmas 11. Michael McDonald / World Out of a Dream 12. Mikki Lane / Fa La La Love Ya13. Michael Campbell / Santa's Coming 14. Amanda Ann Platt & the Honeycutters / Christmas on a Greyhound Bus  15. Tom Petty & the Heartbreakers / Restless16. Denise LaSalle / Santa's Got the Christmas Blues 17. Koko Taylor / Have You Heard the News18. Sharon Jones & the Dap Kings / Just Another Christmas Song19. Swampboy / The Christmas Blues 20. Floyd Dixon / Empty Stocking Blues 21. Ray Charles / This Time of Year 22. Jamie Cullum / Beautiful Together23. Norah Jones / It's Only Christmas Once a Year24. Charles Brown / A Song for ChristmasSpotlights Shows

Sharon Jones, Executive Director, Texas Business Leader Alliance joins KRLD's David Johnson on this episode of CEO Spotlight.

Support the Show - Merch including coffee mugs, tees, hoodies, backpacks, duffle bags, clocks, coasters, phone jackets, leggings Pacific Street Blues & AmericanaDecember 8, 2024 (part 2 of 2)23. Eugene Hideaway Bridges / Merry Christmas Everybody24. Roomful of Blues / Santa Claus, Do You Ever Get the Blues 25. Sharon Jones & the Dap Kings / Just Another Christmas Song26. Rotary Connection / Christmas Love 27. J.D. McDonald / Boogaloo Santa 28. Bob Seger / Sock It to Me Santa29. Brian Setzer / Dig That Crazy Santa Claus 30. Chuck Berry / Run Rudolph Run 31. Jonny Lang / Santa Claus is Back in Town 32. Black Crowes / Dirty Cold Sun 33. Billy Gibbons w/ Larkin Poe / Stackin' Bones 34. Orinthi / Some Kind Feeling35. Los Lonely Boys / 16 Monkees36. Jesse Dayton / Redneck Friend37. Heather Myles / Big Cars 38. Lorraine / Dear Nebraska39. Susan Tedeschi / Rock Me Right Contact Us on Facebook

This week's show sees Pete feature great new and recent releases from Gerardo Frisna, Reckoners and from Flevans. There are birthday celebrations for Betty Everett, Dr John, Smoove and for Jocelyn Brown. He also pays respects to Sharon Jones, who left us 8 years ago this week. For more info and tracklisting, visit: https://thefaceradio.com/superfly-funk-and-soul-show/Tune into new broadcasts of the Superfly Funk & Soul Show, LIVE, Fridays from 10 AM - 12 PM EST / 3 - 5 PM GMT.//Dig this show? Please consider supporting The Face Radio: http://support.thefaceradio.com Support The Face Radio with PatreonSupport this show http://supporter.acast.com/thefaceradio. Join the family at https://plus.acast.com/s/thefaceradio. Hosted on Acast. See acast.com/privacy for more information.

Send us a textWelcome to Guess the Year! This is an interactive, competitive podcast series where you will be able to play along and compete against your fellow listeners. Here is how the scoring works:10 points: Get the year dead on!7 points: 1-2 years off4 points: 3-5 years off1 point: 6-10 years offGuesses can be emailed to drandrewmay@gmail.com or texted using the link at the top of the show notes (please leave your name).I will read your scores out before the next episode, along with the scores of your fellow listeners! Please email your guesses to Andrew no later than 12pm EST on the day the next episode posts if you want them read out on the episode (e.g., if an episode releases on Monday, then I need your guesses by 12pm EST on Wednesday; if an episode releases on Friday, then I need your guesses by 12 pm EST on Monday). Note: If you don't get your scores in on time, they will still be added to the overall scores I am keeping. So they will count for the final scores - in other words, you can catch up if you get behind, you just won't have your scores read out on the released episode. All I need is your guesses (e.g., Song 1 - 19xx, Song 2 - 20xx, Song 3 - 19xx, etc.). Please be honest with your guesses! Best of luck!!The answers to today's ten songs can be found below. If you are playing along, don't scroll down until you have made your guesses. .....Have you made your guesses yet? If so, you can scroll down and look at the answers......Okay, answers coming. Don't peek if you haven't made your guesses yet!.....Intro song: Wipe Out by The Surfers (1963)Song 1: Rock and Roll by The Velvet Underground (1970)Song 2: Exploding Head by A Place to Bury Strangers (2009)Song 3: Boulevard of Broken Dreams by Green Day (2004)Song 4: Amores: IV by John Cage (1943)Song 5: Miss You by The Rolling Stones (1978)Song 6: Rumors by Sharon Jones & the Dap-Kings (2017)Song 7: Pontius Pilate's Home Movies by The New Pornographers (2023)Song 8: Bumper by Cults (2011)Song 9: Always on My Mind by Willie Nelson (1982)Song 10: Victor's Lament by Philip Glass (1977)

This week Ari sits down with Zena White, the chief operating officer at Partisan Records. Partisan is an internationally renowned independent record label headquartered in Brooklyn, NY. Zena has overseen global strategy for #1 charting, Grammy-nominated, Mercury Prize-winning album campaigns across Partisan's diverse roster that includes IDLES, PJ Harvey, Cigarettes After Sex, Blondshell, the Fela Kuti estate and many more. Zena is also on the board of organizations like World Independent Network, A2IM, RIAA, and is a Recording Academy Member. Prior to Partisan, Zena was Managing Director at The Other Hand marketing services company in London, where she worked with artists such as Run The Jewels, Sharon Jones & the Dap-Kings, Charles Bradley, and more.Zena tells Ari about ORCA (Organization for Recorded Culture and Arts) a nonprofit she's involved with that uses research to demonstrate the economic, social, and cultural value of music. Then later, she takes us behind the scenes of Partisan Records, explaining where they spend their marketing money, how much they spend, and more. Ari and Zena discuss ‘old-school' marketing tactics like radio, PR, print media, digital and TV, and Zena sheds light on how artists get on Late Night shows… along with how much that costs. Yep—it costs. Ari and Zena also dive deep into the world of ‘new media' and discuss how Partisan spends its money in the new age of social media. Tune in to hear stories about how Cigarettes After Sex got off the ground and to get a glimpse into the inner workings of indie labels!https://partisanrecords.com/ https://www.orcaformusic.com/ 00:00 Investing in Artists: The New Music Business04:48 Inside Partisan Records: A Label's Journey10:00 Cigarettes After Sex: A Case Study in Success24:42 The Balance of Data and Creativity in A&R34:06 Marketing Strategies for Independent Artists40:50 The Evolving Landscape of Music Marketing46:28 Public Relations and Its Impact on Artist Development52:13 Navigating Television Appearances and Their Costs55:30 The Role of Local Press in Ticket Sales01:02:26 Influencer Marketing and New Media Strategies01:08:58 The Formation and Purpose of Orca01:19:05 Defining Success in the New Music BusinessEdited and mixed by Ari DavidsMusic by Brassroots DistrictProduced by the team at Ari's TakeOrder the THIRD EDITION of How to Make It in the New Music Business: https://book.aristake.com Hosted on Acast. See acast.com/privacy for more information.

Today, we sit down with the multi-talented Greg David, a guitarist, music producer, and engineer.In Part 1 of this conversation, we explore Greg David's journey through music production, the evolution from working with loops to embracing live takes, and his deep understanding of mixing and dynamics. Greg shares his perspective on creating authentic music by experimenting with non-traditional panning techniques, understanding the importance of dynamics, and the impact that recording in live settings can have on a track's energy and feel. His reflections on how the recording techniques of the past can still influence today's music provide a fresh perspective on approaching music production in modern times.Throughout the episode we discuss:* The influence of Sharon Jones and The Dap-Kings on recording techniques.* How live takes differ from overdubbing and their impact on a track's authenticity.* The importance of dynamics and how Greg incorporates them into his production.* The impact of saturation and how different levels can change the feel of a mix.* Greg's transition from sample-based music to creating his own unique sound using live instruments.* How Greg's mixing philosophy revolves around creating space and balance within a track.Timeline:0:00 - Intro 1:14 - Welcome Greg David1:50 - Track 1: "Sail On" by Sharon Jones & The Dap-Kings4:59 - Discussion on Sharon Jones & The Dap-Kings recording techniques9:33 - Track 2: "Be Better" by DJ Harrison12:28 - Organic textures and glued mixes of DJ Harrison15:11 - Live takes vs overdubbing18:52 - Toru's recent experience using live takes in his production23:46 - Track 3: "She's Gone" by Disclosure28:24 - Discussion on the modern, clean mix of the Disclosure track32:31 - Starting with drums35:33 - Greg explains why he gave up sampling and began creating all his sounds41:10 - Explanation of ADSR and how it applies to mixing45:56 - Beginning the discussion on Greg's mixing philosophy47:03 - OutroList of References from the Interview:Songs:* "Sail On" by Sharon Jones & The Dap-Kings* "Be Better" by DJ Harrison* "She's Gone" by DisclosureProducts:* Ableton Live (mentioned in Greg's workflow)* Tascam 388 (used for recording drum breaks)Connect with Greg David:* Instagram: @gregory_david_gtr* Spotify: Gregory David* YouTube: @GregorydavidmusicConnect with Toru:* Website: torubeat.com* Instagram: @torubeat* YouTube: @torubeat* Spotify: Toru* Apple Music: ToruCredits:This episode was co-produced, engineered and edited by Matthew Diaz. From ProducerHead, this is Toru, and in a way, so are you. Peace. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit torubeat.substack.com

Sam Merrick is a Nashville based drummer, currently holding the drum set chair at & Juliet on Broadway at the Sondheim Theater in New York City. Previously, he spent nearly five years and played over 1200 performances with the national tour of Hamilton: An American Musical. He has also recorded and/or performed with Sharon Jones and the Dap Kings, Toots and the Maytals, Jalen Ngonda, Saun & Starr (Daptone Records), The Denver Symphony, People's Champs, Kendra Morris (Colemine Records), and many more. Commercial clients include HBO, Levi Strauss, Chase, AT&T, and This American Life Podcast Network. In this episode, Sam talks about: Balancing maintaining a Broadway chair with other musical opportunities Relearning how to trust his instincts outside the highly controlled environment of a Broadway show Moving from the note-for-note specificity of Hamilton to the longer leash of & Juliet Working with producer Max Martin Maintaining a "healthy ecosystem" of subs

We report on FFRF's efforts to keep Christian nationalists in check around the country. Honoring the anniversary of the birth of the anti-fascist singer/songwriter Woody Guthrie, we hear the funk/soul version of "This Land is Your Land" performed by Sharon Jones and the Dap Kings. Then, FFRF's Legal Director Patrick Elliott describes our lawsuit challenging the Louisiana law requiring the posting of the Ten Commandments in all public-school classrooms and our efforts to rein in Oklahoma's Christian nationalist State Superintendent of Public Education.