Podcast appearances and mentions of helen white

In this mini edition of Waterfall, Mike & Karen are joined by Special Advisor on Household Food Waste for WRAP, Helen White, for a discussion on the connection between food waste and water waste that is bursting with useful tips and tricks. The full length edition of this episode was originally released on 31/3/2023.

As 2024 comes to a close, we take a moment to reflect on what has been a busy year at Genomics England and in the wider genomics community. Throughout the year, guests have joined us to discuss groundbreaking research discoveries, important ethical considerations, and share their personal stories. It was also a year of transformation: we rebranded our podcast as Behind the Genes, welcomed Dr Rich Scott as our new Chief Executive Officer, and launched the Generation Study, in partnership with NHS England. The Participant Panel also saw changes, with Kirsty Irvine stepping into the role of Chair and Adam Clatworthy and Helen White becoming Vice Chairs. In this special end of year episode, Adam Clatworthy, Vice-Chair of the Participant Panel, sits down with Dr. Rich Scott, CEO of Genomics England, to look back on the highlights of 2024. Together, they revisit key podcast moments, reflect on research discoveries, and share insights into the evolving world of genomics. Below are the links to the podcasts mentioned in this episode, in order of appearance: Celebrating genomic breakthroughs - Insights from the Festival of Genomics Shining a light on rare conditions How has a groundbreaking genomic discovery impacted thousands worldwide? How can we work in partnership towards a new era of genomic medicine and research? How has design research shaped the Generation Study? How can we bridge the gap between diverse communities? Can Artificial Intelligence accelerate the impact of genomics? "It's really important that we just continue to bring that patient and participant community on that journey, just to ensure that they really understand the full benefits. And we've talked about that on the episode today. I know that the panel has always encouraged the Genomics England team to look at its boots while shooting for the moon. I really like that phrase just to make sure, look, we can't forget where we've come from to make sure we're taking people on that journey" You can download the transcript or read it below. Adam: Welcome to Behind the Genes.  Rich: Our vision at Genomics England is a world where everyone can benefit from genomic healthcare, thinking about how we ensure the lessons we've learnt through our diverse data programme is embedded across all of our work.  So that word “everyone” applies to people in lots of different ways, different communities people come from, different socioeconomic backgrounds, making sure that equity is baked into all of our work.  And there's real opportunity for genomics to play a broader role than in rare conditions and in cancer, we're proud of the impact we're already having there, and we should really look to the future.  Adam: My name is Adam Clatworthy, and I'm the Vice-Chair for rare conditions on the Participant Panel at Genomics England.  On today's episode, I'm going to be joined by Rich Scott, CEO of Genomics England.  We're going to be taking a look back at the key milestones from 2024 for Genomics England, and really discussing our hopes and aspirations for the year ahead.  During this episode we'll also hear from some of our guests we've had on the show this year, who have helped shape our discussions and shared some of their most impactful moments and insights.  And if you'd like to listen to more like this, then please subscribe to Behind the Genes on your favourite podcast app.  So, with that, thanks for joining me, Rich, how are you doing?  Rich: I'm great, thanks for hosting today, I'm really excited about it.    Adam: So, Rich, it's been a pretty exciting year for you, you've taken on the CEO role at Genomics England full-time, so why don't you just start by telling us about how those first few months have been for you?  Rich: It's been a really exciting year, I think for us overall at Genomics England, and obviously personally taking on the CEO role, which is an enormous privilege.  I've been at Genomics England nine years, and I think both a privilege and a real responsibility to take on the role.  To think both about how we continue to honour the commitments we've given our participants and those we work with, and to think about the future, where we might go together, what evidence we need to generate, what our systems need to support.  So it's been great taking on the role, and thinking about that, both the present and the future, and there's been lots, as we'll talk about, there's been lots going on.  Adam: No, that's great.  And I must say for myself as well, I started the Vice-Chair role at a very similar time to you early in the year.  When I started, we were in the process of looking for our next Chair.  Obviously, we had Jillian and Rebecca, both standing down, after many years in the role.  They've been there from the start, really guiding the Panel through this amazingly successful period.  But for me, I've really enjoyed working in partnership with Helen, who is our Vice-Chair for cancer.  It's been a real partnership, in terms of filling in for that interim leadership role.  And we wanted to make sure that we weren't just caretakers, we were really continuing to be actively involved in a lot of the discussions that are happening with your colleagues across Genomics England.  Very much leading the Panel, and starting to have those important discussions around, where does the Panel go next?  And what's our strategy for the next two to three years?  What are the key areas that we can drive real value and impact, in line with your own milestones at Genomics England?    And, of course, I've just loved getting stuck into chairing the Panel meetings as well, for me, that's the best part, is really bringing together these amazingly diverse and passionate people.  With so many different personalities, lived experiences, and a combined passion for just taking this forward together, and making sure that the benefits of genomics really impact, and that's felt by the wider community itself.  So there's been lots of highlights to recognise this year, a real stand-out for me has to be the Genomics England Research Summit, from what I understand it was the most attended event to date.  And it was just so good to see that a lot of the Panel were front and centre across that event, sharing their stories, having a really active role, whether introducing speakers, or telling their own journeys as part of the Q&A sessions.   I myself was really privileged to be on stage with Baroness Nicola Blackwood, literally nine days after I officially started the role.  So it was great to just dive in at the deep end, get in front of an incredible audience, and just see that the broader Panel was front and centre of the event itself.  And it was just great to see how popular the event was, many more people coming to have a chat to us on the stand than would have found us before, so, all in all, a really big highlight for myself.  So, for you, Rich, are there any other highlights that you want to call out for this year?  Rich: And first to say, absolutely agree with the Research Summit being, you know, a highlight.  The diversity of the discussions that we had, it's one of the things we enjoy most about thinking about creating the summit, as you say, involving the participants very much at the centre.  Like, physically at the centre of the room, for people to come and talk to participants and hearing stories.  And then really seeing how over the years we can see the impact growing, and having talks, whether it's about individual findings, or big research studies.  So the final talk of the day was from Charlie Swanton.  He was talking about some really exciting work that his team have done in our National Genomics Research Library, making a really important discovery about extra chromosomal DNA in cancer, and that's now been published in Nature.  And then right next to him, we were having a policy talk from Sam, who's the CEO of NICE.  And you can see the range of things, the sorts of evidence, sorts of conversation, we need to have, so that was really fantastic.  I'd call out one discovery this year that maybe we'll come back to, and one other big highlight.  So I think the big discovery this year was the discovery of this piece of non-coding sequence in the genome called RNU4-2, which turns out to be pretty much the most common cause of developmental disorders that's been discovered.  And it's just so exciting to see that having been discovered in the National Genomics Research Library.  And then the news, the knowledge spread, across the world, and family support groups coming together to understand and learn more about what that means for them.  So that was, I think, the discovery over the years at Genomics England that's touched me most, seeing that story.  And I'd say for us, organisationally, another big highlight has been the launch of our newborns programme, the Generation Study.  So as lots of people listening will know, we've been actually thinking about what the questions underlying this study are for a good number of years, doing a lot of preparatory work.  Actually, before we even started, setting up public dialogue jointly with the National Screening Committee about what the public were keen to understand and the appetite for research in this area.  And then we've been spending several years designing the study, working with the NHS how to design, safely launch it, National Screening Committee involved all along, and working with patients and the public to design it.  And this year now launching the study at a public launch, just a couple of months ago, by the time people are listening to this, and at the time of recording, more than 2,000 families have joined the programme.    So really exciting, us exploring a really big question for genomics, about the use of whole genome sequencing in newborn babies.  Whether that should be offered to every baby at birth, primarily driven by that desire to do better for those children born with treatable conditions, where genetics, genomics, can be a way in to finding them, but doing that at the right pace, and very much in a research setting.  That's been a real, a moment, I think there's been so much work on the path to it, but it's right to sort of celebrate these staging posts on the way.  We're early in the programme, there's lots to do, lots to work through, lots of evidence that we'll accrue, but it's really exciting to be at that staging post.  Adam: No, absolutely, and from my side, I think seeing all of the media pick up for the Generation Study launch, you could really see the excitement in the wider kind of community.  Seeing it shared on social media, obviously those part of the 100,000 Genomes Project, seeing things like this.  It's like they can see the tangible outcomes of all the work that they've done as part of that initial project, and seeing how those learnings are then taken onto this new study.  So we'll now hear a clip from earlier in the year from Louise Fish, who is the former CEO of Genetic Alliance UK, who shares her thoughts on the potential of the Generation Study.  Louise: The Generation Study is looking at 200 conditions and whether it's possible to screen for them.  And for all of those 200 conditions, it's a really exciting opportunity to see if we can learn more.  Both about the potential to understand and develop treatments early, but also just about the chance to understand the natural history of that condition so much earlier than we do at the moment.  And I think that's it, it's that understanding the natural history of the condition really early, and understanding how a family can be helped, through all aspects of the condition, which is giving people most excitement I think, alongside the potential to develop treatments.  Adam: So now, let's look back at the priorities for Genomics England for 2025.  Now, Rich, would you like to just take us through some of the things you'll be focusing on next year?  Rich: Yes, one of the things that we've been doing this year, but also actually in the year before, is really looking to the future.  And saying, where might we be in terms of genomics really living up to the impact it could have, if we collectively, in the UK and working with international partners, sort of get things right?  And that's very much about balancing the realism of where we are, and the impact we're already having, and being proud of that, and then getting that same sort of ambition and realism casting to the future.  And I'd say, I think there are two really broad themes.  I think the first thing is, we're enormously proud of the impact we've had already for families with rare conditions, and people with cancer, and that impact will continue to grow in the coming years, in those areas.  And in the next few years, that's where the biggest impact of genomics will continue, and the rare disease programme we have thinking increasingly about how we support the generation of evidence and pathways that lead to rare therapies.    So building, getting better all the time at finding diagnoses, which is still a long journey we're on, and continuing that work.  Increasingly thinking about how we can support therapies, and in cancer, again, playing a better role in cancer, both by driving efficiency in diagnostics, and efficiency in identifying where therapies enabled by genomics can be targeted.  And we see lots of different examples of that, clinical trials is a big area where we hope to have more impact in the future, but also thinking about some of the novel therapies that are there, both for rare conditions, but also, for example, the cancer vaccines.  And I think we're uniquely placed in the UK, because of our partnership at Genomics England with the NHS, and the broader science ecosystem, to have that impact.  So that's the sort of like continuing very much where we are, but really pushing those boundaries.  And then also, if we look to the future, to say, what role could genomics play?  And we, as you know, our vision at Genomics England is a world that everyone can benefit from genomic healthcare, and I think that plays out in a couple of ways.  Firstly, thinking about how we ensure the lessons we've learnt through our diverse data programme is embedded across all of our work, so that word “everyone” applies to people in lots of different ways, different communities people come from, different socioeconomic backgrounds, making sure that equity is based into all of our work.  And then also, to say there's real opportunity for genomics to play a broader role than in rare conditions and in cancer, we're proud of the impact we're already having there, and we should really look to the future.  And as we set out where we think what evidence is needed and where we need to learn what the digital infrastructure that we build and others build, need to build that to support that, we look across a few different areas.  But really you can see genomics playing a role across the lifetime, in different places in different roles.   To pick one really powerful example is something people often refer to as pharmacogenomics.  Which is a medical term for what boils down to look at a person's DNA sequence, that's the genomics bit, and making decisions based on what drug to give them, what drugs to avoid, or perhaps what dose to drug to give them.  Based on, for example, the desire to avoid adverse drug reactions that people might be at high risk of, and you can identify that risk looking at the DNA.  That is one example of genomics playing a role in being increasingly sort of preventive, getting away from disease, getting upstream of disease arising, or harm arising.  And there are other opportunities in common disease as well, sort of casting forward to what that impact might be, and we feel that genomics could play a role, really broadly, across healthcare, in probably as many as half of all healthcare encounters.    But what we need to do over the coming years for that to potentially be the case is we need to build out the evidence, and we also need to understand what digital infrastructure we need, to make that a possibility.  So that the information is there in simple format, for patients and the public, for their GPs, for their pharmacist, for people in any speciality in hospital, not just sort of rare disease clinics or in cancer, as we are at the moment.  And so very much we're thinking about the programmes that we and others could run to ask some of those questions, to think about what we need to build out.  We feel that the UK's uniquely placed to develop that evidence, so that we can make the choices about how genomics is used, and so we can be ready to embed it.    And it really aligns with that shift that we see and we hear, for example, in government being talked about, when we're looking about sort of the shifts that the NHS sees as essential.  You know, increasingly preventive, increasingly digital, increasingly in the community, and that point of sort of getting upstream.  And genomics is going to be an important part of that.  And we at Genomics England are really excited about the role that we can play, whether it's through the digital infrastructure we build, whether it's the programmes that we run to develop the evidence.  Or whether it's through the ethics and the engagement work, the work with the Panel, and the work with the wider public, to understand how we might develop this evidence, what people are comfortable with, what the expectations are.  And I think that, pulling that together is complex, it's really exciting to think about how we do it.  I think we in the UK are uniquely placed to take advantage of that.  Adam: That's great, and I think the pharmacogenomics piece is fascinating.  I mean, you hear many stories of people having adverse reactions to certain medications, and you wouldn't even think it's something that may be linked to their genetic makeup.  It's so important that we take people along that journey, around what the benefits are, the ethics, to make sure that people really understand the journey that we're making and what the potential impact could be.  Whilst there's lots of amazing new areas to develop into, a key focus for us on the Panel is really continuing to demonstrate how the 100,000 Genomes Project participants continue to have an impact, and they're helping shape a lot of these developments.  So they generously donated their data, it not only helps Genomics England develop the systems and services that now benefit many families, but it also continues to drive that scientific and technological enhancement.  So it wasn't just about reaching that 100,000 genomes, that project was really the starting point, as it were, it's not the finish line, it laid the groundwork for a lot of these developments.  So it's about how do we focus on maximising the benefit for those participants over their lifetime, not just at that one point in time.    We know genomics is evolving so rapidly, what you can glean from a genome today is far more than what was possible in 2013.  And we know the Diagnostic Discovery team is continuing to analyse the data for participants in the project based on these new advances, the team led by Suzi (Walker), who's doing some amazing work there.  Using all the latest tools and enhancements, just to make sure that those participants are really benefiting from that learning.  So, we just need to make sure we stay close to that wider community, and just ensure they're not forgotten, that's really a key north star for us as the Panel.  And something that we've been pushing is better ways that we can help to communicate the ways that you're celebrating these successes, providing regular updates on research progress, offering personalised reports based on the latest findings.  And it's all about providing them with that hope.  Some people may never get a diagnosis, but it's about giving the hope that one day they might get that phone call out of the blue, so it's about giving the hope that those possibilities are out there for others.    So we're now going to shift gear onto hearing from Shaun Pye, who is the father of Joey.  She was diagnosed with DYRK1A syndrome, which is a rare chromosomal disorder, which causes a degree of developmental delay or learning difficulty, at the age of just thirteen.  In this podcast episode, Shaun and his wife Sarah told us of their journey to Joey's diagnosis, and how their role in writing the BBC television comedy drama series, There She Goes, has helped to shine a light on the rare condition community.  Shaun: Then the opportunity came along with 100,000 Genomes, and we signed up immediately.  And then that, they did that, and it was a few years before that went through the system, and then we had, out of the blue really, we were asked to go and see a geneticist, and we had no idea that this is what it was.  I honestly thought it was just a routine sort of, we've got a few more theories or something, and she just said, “We've found out what it is.”  And it's like, that moment is, well, we tried to describe it in the TV programme, but it is quite hard to describe what goes through your mind, when after thirteen and a half years somebody suddenly says, “Oh, by the way, that thing that happened with your daughter, we've worked out what it is.”  Adam: So here, Rich, did you want to provide some updates around future progress, particularly in diagnostic discovery and expanding the research?  Rich: When we're looking to the future, we're looking sort of in two areas.  How we can build the impact we're having today for families with rare conditions and cancer, and that very much includes the participants in our programmes, 100,000 Genomes, those through the NHS Genomic Medicine Service, who joined the National Genomic Research Library.  And we've seen, I think the number that I'm most proud of at Genomics England is that number of diagnostic discoveries returned to the NHS, which has just hit the 4,000 mark.  And for those less familiar with the terminology, essentially what that means is where either researchers or the internal team at Genomics England have identified changes in the genome data, that with new knowledge, often with a fine tooth comb, it's considered likely that that is the answer to the cause of the rare condition in that person in the programme.  So that's 4,000 of those returned to the NHS.    And that tells you a lot about where we are for families with rare conditions, and I think there's two points here.  The first one is, we've got a long way still to go to do what we want to for families with rare conditions.  I'm a doctor and still see families in my clinic once a month at Great Ormond Street, even with the incredible advances we've had over the last particularly 10or 15 years, with the changes in sequencing and analysis, we still find an answer for the minority of families.  So that number is growing, and we're really proud of how much better we've done, and there's a long way left to go.  And the really critical thing is designing a system which we're so lucky with in the UK here, where we can continue to learn.  And that's not just for learning for the knowledge of people who might encounter the health system in the future.  It's to learn for those people who've joined the National Genomics Research Library, who've already trusted us to be the custodians of their data, and to do better in the future.  And that's what our diagnostic discovery work really aims to do.  And sometimes that's about new gene discoveries.  So all the time new things are being discovered each year.  And if you look at the DNA code, if you like, boil it down very simply.  99% of it is what we call non-coding DNA, I'll come back to that, about 1% is the genes, which if you like are sort of the books in the library of the DNA, overall DNA code, that we understand relatively well how they're read by the body.  The bits in between, it's a bit of a funny, well-spaced out library this one, that's the 99%, actually we've had very little understanding of most of that code in between.  But we're beginning, and particularly this year, to gain an understanding of how we might interrogate some of those pieces.  And not all of the answers lie in that non-coding DNA, there's lots of answers still left in genes that we don't understand well.    But one of the examples I mentioned earlier, and in fact the thing, the single discovery I guess which I'm most proud of having happened in the National Genomic Research Library is this discovery of this non-coding region called RNU4-2.  Which is a funny, like technical series of letters and numbers, but basically it's a very small patch of the whole DNA code.  Where this year, scientists discovered actually about 60 patients in the families in the National Genomic Research Library where that was the cause of their child's developmental disorder.  Actually, that knowledge has really rapidly spread across the world.  So I actually saw on social media at the weekend, from one of the scientists involved in the discovery, that the family support group that's been set up for what they're calling ReNu syndrome, which I think is a lovely name in itself, speaks to that word hope that you mentioned, Adam.  There are now 248 members of that group, and that's how fast that knowledge spreads across the world.  And what we're doing is thinking how we can support those discoveries more broadly, and non-coding DNA is one of those areas where that growth is, but it's not the only one where we're looking to support things.  But it's so exciting, and I think it gives you a sense of the scale of progress that is left to make.  And I think a really important point is that remains a really important area of our focus, it's not about moving on and looking just to the future, but we need to keep working for the families who are already part of our programmes.    Adam: That's incredible, that 248 members in such a short space of time.  And I love the ReNu name for that, I agree, I think that's a fantastic way of positioning it.  Earlier this year, we heard from Lindsay Pearse, whose son Lars received a diagnosis through that groundbreaking discovery of the genetic change in the RNU4-2, or ReNu gene, which was made possible by whole genome sequencing.  She told us what the diagnosis meant for their family.  Lindsay: This feeling that, like, we've been on this deserted island for eight years, and now all of a sudden, you're sort of like looking around through the branches of the trees, and it's like, wait a minute, there are other people on this island.  And in this case, actually there's a lot more people on this island.  Yes, it's very exciting, it's validating, it gives us a lot of hope and, you know, it has been quite emotional too (laughter).  And also, a bit of an identity shift, because I spoke earlier about how being undiagnosed had become quite a big part of our identity, and so now that's kind of shifting a little bit, that we have this new diagnosis, and are part of a new community.  Adam: You talked about it there, Rich, I mean, it's been really seen as a success story for the whole genomics ecosystem, especially the speed at which it all came together.  From the conversations I had with some of the individuals that were involved in the study, from the date of seeing the first findings in the lab meeting to a polished pre-print going live, was exactly 47 days, which in science terms is less than a second.  So that's how they positioned it to me, incredible.  And you've just said there, they set up this support group earlier this year, and already got 248 members, which is incredible.  The impact on families is significant, the mother touched upon it there.  I mean, for many parents there is that relief that it wasn't something they did during pregnancy, but instead, it is a chance occurrence.  For some, this knowledge means that they can make important decisions, choosing to grow their family, for example.  And it really ends that diagnostic odyssey that many families face, providing answers and potentially ending unnecessary testing that their child is going through.  But I think, and I can talk from personal experience here, that the largest impact is really being able to connect with other families and building that community, you cannot really understate that.  If I look at our own experience of getting a CRELD1 diagnosis for our children, the first time we didn't feel alone was when we could find that community.  We can support each other, we can learn from each other's experiences, and really also drive forward further research into that condition through advocacy.  So, I remember seeing that post on the Facebook page, about that RNU4-2 discovery, and this was before I'd even started in the role at Genomics England on the Panel, but you could really feel that excitement and the relief that they had.  And they mentioned that the official paper only had 36 other people worldwide, they found this little Facebook group that they created with five families in, and in the space of, what, 6, 7 months, they're already at 248.  That's all people that understand what they're going through.  And it's really hard to describe, it's like finding your family that you've never met, people that understand, and they really get what you're going through.  And being able to share tips, advice, learnings, and things that everyone's going through at different stages in their child's life.  So, I really don't think you can talk highly enough of that, that community aspect, and that's just been amazing to see.  And, look, this new era of research into the role of non-coding RNA genes, it really may open more opportunities for diagnoses for patients, participants potentially leading to hopefully more breakthroughs in the year ahead.  So now we're going to move on to why it's so important to engage patients and participants in the genomics world.  So, we'll now hear a clip from Helen White, who is the Vice-Chair for cancer on the Participant Panel.  Now Helen and I have been working really closely together as Vice-Chairs in this interim leadership role, to really ensure that we continue advancing the Panel's strategic initiatives while we recruit that new Chair.  So it's been amazing learning and working with Helen.  In this clip, she discussed an important topic that's been very much top of mind of the Panel, which is the importance of involving the patients and public in genomics research.  Helen: I think, you know, as patients, members of the public, we're eager to get on and for change to happen and things to be better, but it's, yes, a big, big process.  But also, good to hear that you talk about it being a collaborative approach, it's not just Genomics England, it's the NHS, it's members of the public and patient voices, it's other organisations working in partnership.  Adam: Now I think we all recognise the importance of engaging patients and public to ensure diverse communities understand the benefits of genomics, and actively involving patients and participants in the research, to make sure that they're including the perspective of what matters most to them.   Rich: I mean, it goes back to the thing that we really see as central to the value that we at Genomics England can provide.  So we increasingly think of ourselves as a data and evidence engine for national scale genomics, and I think a really important to call out there is that evidence is broad.  And part of that evidence is about public expectations, public preferences, and patient preferences.  And if you think about the big things that we do and where we bring that value, and bring that data and evidence engine role, is, you know, firstly in the digital infrastructure that we build and the data that we hold and present to our various users.  Secondly, it's in the evidence that we distil from that, and very much thinking about part of that being evidence in and around, including that piece on what people expect, this isn't just about hard science and health economics, this is an equally if not more important part of that.  And then thirdly, it is the third area of our focus is on that engagement piece, because that's so fundamental.  And I think you and Helen called that out absolutely right, about that being, that's integral to the whole process, and it's the beginning of any programme you need to start with understanding what the big drivers are, what the expectations are, and doing this very much together.  That's one of the reasons we're so fortunate to have the Participant Panel we do, in our Newborns Programme the Panel have been an important part of that design from the outset.  It's also about broader engagement with different communities, people who currently don't engage with genomics, because they've had no need to, sort of understanding that piece.  And I think we've definitely seen over time in health data research, but also research more broadly, where it's quite easy for these things to be disconnected.  And that results in two things.  It results in research happening about interesting esoteric stuff, but not on the stuff that makes a difference for families.  And I think that's really important, because researchers need to be directed in the resource limited world towards the things that really make a difference.  So that's the first thing.  And the second thing is, it's very easy, with the best will in the world, for people to make wrong judgements about what people are or aren't content with, and you need therefore to be absolutely transparent about what the research is.  Be really clear about what those questions are, and let people challenge you, right from the outset, so that we can design research studies, but also, the system as a whole, together in a way that everyone has a say.  Not everyone has the same view, but how we can develop a system that takes into account those things and gets that balance right.  This is about making a difference to people's health outcomes, thinking about how we achieve that, while also balancing off all of the different views there are, is really important.  And that's at the heart of it.  And it can be scary, because it's right that there is that challenge out there.  And it's one of the things that I think we've learnt at Genomics England, how important it is to be really open to that challenge, and to do that piece really early in all of our work, and have it there baked into our governance as well, for example, the Participant Panel.  Adam: Absolutely, and I think you've summarised all the key areas there really well, in terms of the importance of that engagement.  And one other area I'd just like to pick up on is the impact it can have on the patients or the participants, simply by having that connection with the researcher, that's doing all of the amazing stuff that for some of us, it's really hard to comprehend.  But having that interaction and collaboration with them, it's so important in terms of, again, I go back to giving you that hope.  And a real highlight for me at the Genomics England Research Summit was when Hannah, one of the members of our Panel, she came running over to us and she was just beaming.  And she said, “Guys, you'll never guess what, I've just met the scientist who discovered my daughter's diagnosis in the NGRL.”  And you could see that she was so excited, you cannot understate the impacts that can have on them as a family.  Like having that interaction and that personal connection with the person that really in some ways kind of changed their lives, in terms of understanding more about what that could mean for their daughter growing up, and how they're managing the condition.  So, it's amazing when you can see those highlights and hopefully we'll see more of those.  And it's also really important that we get that diversity I think, as well, in that collaborative approach, just to make sure that it is equitable for all.  And that really brings us on nicely to the next topic, which is about how do we bridge the gap between those diverse communities, and make sure that we're reaching everyone as best as possible?  So we're now going to hear a clip from Sandra Igwe.  Sandra is a CEO and founder of the Motherhood Group, speaking about the Generation Study.  Now, Sandra spoke about the importance of building trust, and how it is vital to engage with a diverse group of communities in the design of research studies.  Sandra: Every community's different, and every patient is different as well.  And so that may require different focuses or different formats or different messengers for different groups.  And so we like to have people with lived experience from the community representing that, and also driving the uptake of consent as well.  But failing to engage diverse voices can lead to perpetuating inequalities in access and uptake.  So it's really important to have representation, because the lack of it in research can overlook communities' specific concerns and needs.  Adam: So, Rich, did you want to talk about why it's so important to have that diversity?  Rich: Yes, I mean, it's critical.  One, I mentioned earlier, our vision as an organisation is a world where everyone benefits from genomic healthcare, and that word “everyone” really resonates.  I think Sandra has been really an important part of the work that we've done over the last couple of years, particularly through our Diverse Data programme.  But I think one of the real challenges for us is how we make sure that that is something which is embedded across all of our work.  And that's something that we're really focused on at the moment, how we embed the learnings that we've had through that standalone Diverse Data programme into everything we do.  Because we're absolutely committed to that, and I think that is engagement with the diversity of different groups relevant to each programme.  I think one of the real important things is that transparency piece about actually that it's hard to achieve equity in healthcare, full stop, because of historical underinvestment in some of these areas.  And I think being clear with people about that is a really important step, and then talking really practically about why it really makes sense to take different approaches.  And so one thing about our programmes and how we think about the future overall, if genomics is going to make a difference to more than half of healthcare encounters, it needs to be something that across all communities, and across the large majority of people in each of those, that this is something that they want to be part of.  Because it's going to make a difference for them or their families or something they really buy into.  And that's why this isn't just about thinking only about specific programmes where this is a question, it's about making sure that we're designing a system, developing the evidence that is really broadly applicable, and continues to learn.  Because we know that what we learn today is hopefully an improvement on where we are, but we continue to learn and learn and learn.  And it's about creating a system that does that, and does that equitably, or as equitably as we can.  Adam: So we're now going to hear from Moestak Hussein, who works to build and embed cohesion, inclusion, and social justice, in her role at Bristol City Council, in public health and communities.  Moestak talks about the value of co-production, and how this can help to build trust with communities who have historically been underserved or mistreated.  Moestak: If we talk about co-production, true co-production is really creating a power balance where there's no hierarchy, it's an empowering model.  It empowers both the researchers or the person that comes in, but also the communities that participate, and you all start on the same level, on the same outcomes and the same goals and aims that you want to achieve.  Adam: So, if I look at that from our perspective on the Panel, I think co-production in genomics research, so using participant data in the NGRL, is certainly what we'd like to see much more of.  To ensure that research is not only relevant to its intended audience, but also aligns with broader democratic principles of citizenship, accountability, and that transparency as well.  But look, we have to be realistic.  Some genomics research projects are not going to lend themselves to meaningful patient and public involvement in the early stages, but it's really important later on in the research pathway, if the findings identify a patient population who might benefit from that research.  At the moment, involvement of patients and participants, carers in research, is really not great, in terms of the researchers using the NGRL.  So, in conversations what we're hearing is they're saying, “Well, we don't know how to do it, we don't know what steps we should take.”  Or “We don't think it's relevant because we do this particular research.”    But really, our view is that some PPIE, or patient and public involvement engagement is better than none.  Some may not be relevant for all stages of the research pathway, we're not really seeing enough of that happening at the moment, and some papers are even being published without any context of the participants' lived experience at all.  Which can actually be quite frustrating, if you're that patient or parent, and you see a paper published, and you think, well, actually, why didn't they reach out to us?  Just to understand a bit about the symptoms that we're experiencing, what are the challenges that we're facing, just to really add that important context.  So, I think there's certainly an opportunity for us on the Panel, certainly for Genomics England, to be that kind of guiding light for those researchers.  Whether it's providing them with researchers, research papers, or a hub of patient advocacy organisations that are already connecting those patients with researchers.  It's all about signposting them the relevant information, so I think there's certainly things we can do there.  And it really fits in with the bigger engagement piece.  So, whether there's a landing page or a dedicated website that shows them, where do they go, what are the steps that they can take, what's the best practice, what's worked well for another researcher, and how did that lead to really great outcomes for the families involved?  That's where I think we can all play a part in guiding them on that journey, rather than it just being a case of, they're not doing that patient and participant engagement very well, and kind of criticising it.  Let's reach out to them and say, “Look, we can help you and guide you on that journey.”  Rich: I really agree with the need to make those connections happen.  One of the things I think that is often missing is just a confidence just to crack on and do some of this stuff.  And I think, actually, looking at the ReNu syndrome experience, that was work that was swiftly done.  Scientific at the beginning, the initial publication put out there so that people could understand, and was quite medical by necessity, in terms of the speed of getting information out there.  And then very quickly, and quite organically, patient support groups have formed, and also, the scientists are working with that group.  I had a really interesting conversation with Sarah Wynn, who's the CEO of the Unique last week, about how some of that has played out, how the role they've played in facilitating some of that.  And some of it just comes down to sort of really simple things, and working through how you can set up Zoom or whatever meeting, for people to learn about the condition.  And how you preserve anonymity, where that's appropriate, but also allow people to have discussions about their loved ones where they want to, etc.  So it's partly just about giving people the space and the confidence to get on with some of these things.  And as you say our, one of the things we at Genomics England are quite thoughtful about, and I think it's a really good topic to continue talking to the Panel about, is how we get that balance right.  Where, actually, us being a connector and, as you say, signposting useful resources or ways of doing these things, just to break down some of those barriers.  Because almost always the research groups, when they discover something new, this is really new territory for them, and they're often nervous about doing the wrong thing.  And so it's about breaking down some of that anxiety actually I think.  Adam: Yes, absolutely.  In our case, with our condition that we're advocating for our son, we've been working with a researcher.  And it's almost on us as well just to kind of share our story with them, and making them feel more comfortable to ask us questions and be very open and transparent about the more we can share, the more that can hopefully benefit their research moving forward.  It's very much a two-way thing as well, but I like what you said there about having the confidence just to kind of reach out and start those conversations, and have that starting point.  Next topic, we're going to look at some of the innovations that are on the horizon, that we're seeing in the world of genomics.  So, Rich, do you want to take us through what are the most exciting things that you're exploring at the moment?  I know we hear a lot about AI and the technological aspect, so why don't you take us through some of those?  Rich: Yes, so I guess this comes back to that question where we've been looking forward, you know, where might genomics be impactful and making a real difference to people's lives, to helping us have a more efficient healthcare system in the future?  And I think part of that is about this general shift.  You know, genomics technology, we just take for granted now how much it's shifted, how it's within the means of the healthcare system to generate genomic data.  And we're really fortunate in this country because of the digital infrastructure that we've been able to build together with the NHS, that opens up a lot of these questions.  And it's just extraordinary the time we're at in genomics, so almost take those two things for granted, which we should never do.  The change in genomic testing technology, which continues to advance, and secondly, thinking about the digital infrastructure, like the nuts and bolts of what we've got, and the ability to safely store and reuse and analyse some of that data at scale.  And point at two big things.  Firstly, genomics enabled therapies are changing a lot.  So, our understanding, our ability to make a diagnosis, or understand what's different about a cancer, for example, mean that in various ways it's becoming feasible to do more tailored therapies.  Where knowing that, the genomics nitty-gritty of that condition, helps you tailor that, or create sometimes even a bespoke personalised, truly for that one individual, therapy.  And in rare conditions we see that with the so-called N=1 therapies, but also with gene therapies and so forth.  And in cancer we see that with the cancer vaccines, for example.  So that's an enormous area of change, and one of our responsibilities is to support that sort of research, to help identify people who might be eligible for trials or treatments.  But it's also to work with the ecosystem to think about how we can help support the generation of evidence that means that those therapies can be affordable and so forth, on a scalable basis.  So that's one really big area of excitement.  And we see our Rare Therapies Launch Pad being part of that, the National Cancer Vaccine Launch Pad, being part of that.  So that's thing one.  Thing two is AI and machine learning, and I think sat on alongside the sort of broader picture of saying, there's a lot left to learn, there's enormous potential in genomics in terms of playing a role in many different situations, not just in rare conditions, in cancer.  And we know doing that well, but also scaling it, making it really efficient, so that we can do that in a context of a really busy health service, one of the answers is making sure that we're leveraging everything we can about the potential of AI.  And there's lots of different ways in which that can be supportive, I won't list lots of them.  But one of the things that we're doing at Genomics England and working with the NHS is thinking about the most promising areas.  And some of those are quite, like, down and dirty, if you like, so sort of saying, which jobs are there that we can use AI, if you like, as a co-pilot, alongside experienced scientists, to speed up their work?  And we're really excited about the role we can play in a few ways actually.  So the first one, back to that sort of data and evidence engine point, is helping organisations who have a tool, help validate it for use in the NHS, and say, “Does it perform to this standard?  What do we want to say about how it performs from an equity point of view?  And from a clinical safety point of view?” etc.  And making that leap from stuff that makes a Nature paper to stuff that lands in clinic is surprisingly challenging, and that's one of our roles.  And we really enjoyed working with various companies and academics over the last few years on that.  We did some work recently with Google DeepMind, on their AlphaMissense tool, thinking about how we can think about that role that might play, for example, in speeding up the interpretation of rare variants that might cause rare conditions.  And there's enormous potential in all sorts of different parts of the sort of end to end of genomics playing a role in healthcare.  And then I'd also say one of the really important things is because genomics in many ways just needs to be part of healthcare and not be treated differently, we also need to recognise where there are questions we need to work through really thoroughly that are a bit more bespoke.  And one of the things that we're really committed to doing, as we look to the future, is making sure that we can support on some of those questions that we really need to be clear on.  I'll go back to that point on, what do we mean about making sure we understand how a tool is working, and whether it's producing results in an equitable way for all different communities?  How do we understand that?  How do we explain what we understand about the performance of a tool?  How do we make sure that patient identifiable data remains non-identifiable if a tool's been built, trained on data?  Working through some of those questions.  But they're really important for us to do, and we're enormously excited about the potential, and we're really committed to working through in detail how we can make that path to adoption safely and in the way that everyone would expect and desire as rapid as possible.  We're just one step in that process.  But we really see a sort of important role for helping people who are producing various tools or various use cases, helping them prove them, helping them validate them, and making the system more efficient overall, but in ways that we really understand.  Adam: That's fantastic.  Look, not that I'm biased at all, but I can tell you that the AlphaMissense innovations that are being developed are shared a lot internally at Google, it has been seen as an amazing success case.  So hopefully we'll see more on that moving forward.  But in the next clip, we're going to hear from Francisco.  So Francisco is the Director of Bioinformatics at Genomics England, who tells us more about the application of AI and its benefits in genomics in healthcare.  Francisco: So AI is already driving the development of personalised medicine for both research and healthcare purposes.  Now at Genomics England we are investigating the use of AI to support a number of tasks, for the potential impact in both research and healthcare.  In the context of healthcare, we are talking about AI tools that can support the prioritisation, the ranking of genomic variants to allow clinicians to make more accurate and faster diagnosis.  Adam: While all of these innovations sound really exciting, it's really important that we just continue to bring that patient and participant community on that journey, just to ensure that they really understand the full benefits, and we talked about that on the episode today.  I know that the panel has always encouraged Genomics England team to look at its boots while shooting for the moon.  I really like that phrase, just to make sure, look, we can't forget where we've come from to make sure we're taking people on that journey.  So, we're going to wrap up there.  Thank you to Rich Scott for joining me today, as we reflected on key milestones for 2024, and looked at the year ahead for both Genomics England and the wider genomic ecosystem.  If you enjoyed today's episode, we'd love your support.  Please like, share and rate us on wherever you listen to your podcasts.  I've been your host, Adam Clatworthy, this podcast was edited by Bill Griffin at Ventoux Digital and produced by Naimah Callachand.  Thank you everyone for listening. 

In this episode, we explore findings from a groundbreaking study recently published in Nature which revealed potential targets for bowel cancer prevention and treatment. The study provides the most detailed understanding yet of bowel cancer's genetic makeup. The research, which used data from the 100,000 Genomes Project identified over 250 genes that play a crucial role in the condition, driver genes and potential drug targets. Our guests discuss the potential impact of these findings on patient outcomes, screening for bowel cancer, and future prevention strategies. Helen White, Participant Panel Vice-Chair for Cancer at Genomics England is joined by Professor Ian Tomlinson, Professor of Cancer Genetics at the University of Oxford, Claire Coughlan, Clinical Lead for Bowel Cancer UK and consultant nurse in colorectal cancer, and Dr David Church, a clinical scientist fellow and a medical doctor specialising in oncology at Oxford University. "The people that were kind enough to donate samples to the 100,000 Genomes Project, they did so knowing that they almost certainly wouldn't benefit personally from their donation from their gift and that any benefits would be some way down the line and hopefully benefit others which is what we're seeking to realise now. But, you know, it's not a given when we treat people in the clinic so we're very, very grateful to those individuals." You can read more about the study in our colorectal cancer blog and our study findings news story. You can download the transcript or read it below. Helen: Welcome to Behind the Genes. Ian: One of the great hopes is that some of these new genes that we've found could be useful in preventing cancer and it doesn't necessarily matter that they're rare, even if they're only 1% of cancers, by using those and changing those in the normal individual before they have had cancer then we may be able to reduce that risk. So, there are lots of potential new targets for prevention that are coming through.  My name is Helen White and I'm the Participant Panel Vice-Chair for Cancer at Genomics England. Today I'm delighted to be joined by Professor Ian Tomlinson, Professor of Cancer Genetics at the University of Oxford, Claire Coughlan, Clinical Lead for Bowel Cancer UK and consultant nurse in colorectal cancer, and Dr David Church, a clinical scientist fellow and a medical doctor specialising in oncology at Oxford University.   Today we will be discussing a pioneering colorectal cancer study which using data from the 100,000 Genomes Project has uncovered new insights that could transform diagnosis and treatment for patients with bowel cancer. If you enjoyed today's episode we would love your support, please like, share and rate us on wherever you listen to your podcast.  Thank you for joining me today. We're going to be discussing the findings from a landmark study that has been published in nature. This study used data generously donated by people with bowel cancer who took part in the 100,000 Genomes Project giving us the most detailed look yet at the genetic makeup of colorectal cancer better known as bowel cancer. But before we get into that let's start by hearing from my guests. Could each of you please introduce yourselves.  Ian: I'm Ian Tomlinson, I work at the University of Oxford and most of my work is research into bowel cancer, it's genetic causes, the genes that are involved in actually causing the cancer to grow which may be different from genetic causes and also the use of that data to help patients whether guiding future treatments or potentially helping to prevent bowel cancer which would obviously be our optimum strategy to have the biggest impact on the disease and its incidents.   Claire: So, I'm Claire Coughlan, I'm the clinical lead for Bowel Cancer UK and my remit at the charity is to ensure that everything we do is clinically relevant and that we're providing services that meet the needs of those affected by bowel cancer and the educational needs of those health professionals that work with people affected by bowel cancer. I'm also a nurse consultant in colorectal cancer at Lewisham and Greenwich NHS Trust and I lead an urgent referral service there and also work with patients with late effects of bowel cancer.  David: I'm David Church, I'm a medical oncologist and Cancer Research UK advanced clinician scientist at the University of Oxford. I treat bowel cancer clinically and do research on bowel cancer and womb cancer including a lot of research using samples and data from Genomics England data service we're discussing today of course.  Helen: Great, thank you. Now let's turn to Claire to learn more about bowel cancer. Claire, can you share with us how common it is, how treatable it is and if there are any trends in terms of which groups of people are affected?  Claire: Of course, bowel cancer is a relatively common cancer, there are about 46,000 people each year in the UK diagnosed with bowel cancer so that is quite a large number. The thing that really drives us forward in bowel cancer is that the earlier stage you're diagnosed at the greater chance of survival. So, the figures for that are quite stark, we stage bowel cancer through stage one to 4 with one being the earliest stage and 4 being the most advanced.   If you are diagnosed with bowel cancer at stage one you have a 9 in 10 chance of being alive and well 5 years after your diagnosis of bowel cancer. And if you're diagnosed at the other end of the spectrum at stage 4 that drops to a 1 in 10 and should people survive after a diagnosis of stage 4, which more people than before do they will have had a lot of treatment for their bowel cancer so the burden of the treatment will also be with them after that. So, it's really important that we diagnose at the earliest possible stage which is why studies such as the one we're going to talk about today are so important.   We have noticed that there has been a slight increase in being diagnosed at a younger age. That said the latest statistic is 2,600 people were diagnosed under the age 50 in the UK last year so it's still a disease of older people, you still have a greater chance of getting bowel cancer as you get older but it's really, really important that we're aware that you can still get bowel cancer as a younger person.   Probably one of the most exciting things that has happened for bowel cancer of recent years is our bowel cancer screening programme and the age for that now has been brought down to 50, we're not quite there all over the country, but in the UK that is the aim that everyone will be screened for bowel cancer at the age of 50. So, yes it's a common disease and staging an early detection is vital. Helen: That's lovely Claire, thank you very much for that. David, turning to you could you please explain to us how bowel cancer typically develops? David: Yes, so we know compared with many cancer types quite a lot about how bowel cancer develops because the bowel is accessible to collect samples by a technique called endoscopy which is putting a camera into the bowel from which you can sample tumours or lumps. And so from genetic research done in the last 10 years we know that, or we've known for many years actually, for much longer, that cancer is a genetic disease, it's a disease caused by alterations in genes and particularly genes that control whether the cells in our bowel grow normally and die normally as they should do. And collectively when there are alterations in genes that regulate those processes you can have a cell or collection of cells which are able to grow without restraint and don't die when they should do which are some of the hallmarks of a cancer and they also require the ability to spread elsewhere in the body which is what kills people with cancer including bowel cancer. We know from research done in the last 10 to 15 years that some of the alterations in genes that can cause bowel cancer in combination occur very early in our life, even in the first and second decade of life, but don't cause cancer. The earliest detectable abnormality is typically a polyp which is a tumour, a lump within the bowel which is detectable and if removed is almost certainly cured by removal alone but if it's not detected then as that grows and acquires more alterations in genes then it can become a cancer and cancers develop the ability to invade the bowel wall, to spread to what we call lymph nodes or glands nearby and also to spread further afield, most commonly to the liver or to the lungs.   And for most people whom bowel cancer has spread to the liver or to the lungs or elsewhere unfortunately we're not able to cure their disease which as Claire has said is why there is such an importance in detecting cancers and pre-cancers as we call them so that the tumours are not actually cancerous but come before bowel cancer as early as possible.  Helen: Thank you David. Moving on to the study, Ian perhaps you can take this, in the study that you carried out my understanding is that the whole genome sequencing was used to investigate the genetic changes that lead to the development and growth of bowel cancer. And for this participants with bowel cancer in the 100,000 Genomes Project donated both a blood sample and a tumour sample while those with rare conditions only provided a blood sample, can you explain why that is?  Ian: As you said the study really looked at 2 quite separate arms albeit with a little bit of overlap as we'll see. So, one very important aim was to look at individuals, both children and adults, who had medical problems or other conditions that were unexplained but which had some features that suggested that they weren't necessarily inherited but there may be some variation in their genes that had caused them, and roughly half of the programme was dedicated to that.   Within that there was a small number of people who had a strong family history of bowel cancer or who had large numbers of polyps in the bowel and they were analysed in a separate part of the project from what we're mostly discussing. Within the cancer arm there was a collection really throughout England of patients who had most of the common types of cancer and a few with less common cancers.   And because when we're looking at genetic and related changes in cancers we need to make sure that those changes have actually occurred in the cancer as it started growing from its earliest stages with a small number of cells in the body that were slightly abnormal and then progressing. We need to look at what genetic variation the patient has in all the cells of their body. We don't want to look at patients and say that looks an interesting change, we may be able to use that if it's present in all of the normal cells in that patient's system.   We want to make sure the change is specific to the cancer itself and therefore we have to sequence both a sample probably taken from blood and a sample taken from the actual cancer. And in a way we subtract out the changes in the blood to identify the changes that have actually occurred in the cancer itself.  Helen: That's a very helpful explanation. Does this research show that there is a role for whole genome sequencing in clinical care?  Ian: I think my own view is it is all a question of cost. I think the advantages it provides it can assess multiple types of genetic change at once. It is relatively consistent across each cancer's genome between cancers, even between centres mean that it is the method of choice. There are undoubtedly developments that will happen in the future, maybe being able to sequence longer stretches of DNA in one go that will help the analysis.   And some of the computational methods are likely to develop to identify some of the slightly difficult to identify genetic changes but it ought to be the standard of choice. There are issues and potential difficulties in collecting the high-quality samples that have been needed from pathology laboratory and that will be difficult going forward with current budges and there are lots of challenges but ultimately it in some form has to be the method of choice. What wasn't done is to look at other molecule tests or essays, looking at RNA wasn't really done on a big scale as well as DNA and other changes to DNA apart from the genetic changes were not looked at.   So, there are certainly ways it could be improved if you had limitless money but I think the project, 100,000 Genomes has shown the whole genomes are. They have a lot of advantages and ultimately probably will be adopted by the NHS and similar organisations.  Helen: David, could you now tell us about the findings of this pioneering study and what impact these findings might have on people with bowel cancer in the future?  David: So, this is the largest study to date to analyse the entire genome of bowel cancer by some margin and the fact that we've done whole genome sequencing and in so many people it has really given us an unprecedented ability to identify the genetic alterations that drive bowel cancer. And within bowel cancer we've known for some time it is not a homogeneous entity that bowel cancer is not all created equal, that there are sub-groups of bowel cancer and we have been able to refine those over previous efforts. And I guess if you were to ask what the biggest take home for me from the study is it's just the complexity of the disease.   So, as we've mentioned we know that cancer is a genetic disease, that it's driven by genetic alterations, alterations in genes which regulate the growth of cells or the death of cells or the spread of cells. And we've known for many years that there is a modest number of genes which are commonly malfunctioning in bowel cancer and they would be in the tens to dozens really. But with this work we've hugely extended our understanding of the genes that drive bowel cancer and in fact we've discovered nearly 250 genes which are altered in bowel cancer and appear to drive the growth of the cancer.   Now we know that not all of those will be validated and by that I mean that there are associations that we find at the moment, not all of which will be biologically relevant but interpreted in the data we know a large number that are previously undiscovered are or we can be fairly confident of that. And one of the take homes from that is that many of these are only altered in a small fraction of bowel cancers.   So, rather than being perhaps half of bowel cancers or a third of bowel cancers there are a good number of genes, a very substantial number of genes, which are altered in say 3 to even 1% of bowel cancers. And if we think about how we go about targeting those and perhaps we'll come onto treatment later that poses really challenges for how we work and we would think about treating patients with bowel cancer who have those particular alterations in their cancers.  Helen: Thank you David, yes we'll come onto treatment shortly, but I think Claire has a question for you.   Claire: Yes, thank you. For me as somebody who works in this every day this is such an exciting and interesting study, particularly in light of what we said earlier about early detection and how critically important that is for improving outcomes in people with bowel cancer. So, in your view do you think this research could help shape future screening programmes or prevention strategies?  David: That's a great question, I suppose in terms of screening at the moment the majority of screening is done in the UK at least by testing for blood in the stool which is relatively non-specific so I'm not sure that that would be directly impacted by this research. But one area of early cancer detection that is perhaps more relevant is quite a lot of work including from Oxford actually in recent years looking at blood tests. So, testing blood samples for early detection of cancer whereby you can test for genetic alterations, fragments of DNA that have alterations from the bowel cancer or any cancer that circulates in the blood and that tends to rely on a small number of common alterations.   And with this data I could see that we might be able to refine those tests and in so doing improve our early detection of cancer but that would need quite some work before we could actually say look that had real potential I think. And in terms of prevention there are, I think Ian may want to come in on this, one or 2 sub-groups which you might think that you could try to prevent but of course that needs a lot of extra work really.   But I think we have some clues of the biology of bowel cancer and particularly some of the sub-groups where you might think well this drug would work better in terms of preventing that sub-group or that sub-group but that will need to be the subject of future study.  Helen: Ian, did you want to come in on that at all?  Ian: So, at the moment prevention is a fairly new way of helping to reduce the number of people with bowel cancer at the level of the whole population which is what we have in the UK above a certain age group as we heard from Claire earlier. The methods used, again as we heard, are screening for occult blood in the stool and then colonoscopy to identify either hopefully early cancers or polyps and remove those. But when we think about the methods that we use for preventing other diseases then normally where they're successful using a more easily delivered and I have to say less expensive method.   So, high blood pressure is treated to reduce the risk of cardiovascular disease and there are other diseases where those what you might call molecularly-based prevented strategies are coming in. We really lack that for bowel cancer in particular, it does happen for some other cancers, but one of the great hopes is that some of these new genes that we've found could be useful in preventing cancer. And it doesn't necessarily matter that they're rare, even if there are only 1% of cancers, by using those and changing those in a normal individual before they have had cancer then we may be able to reduce that risk.   So, there are lots of potential new targets for prevention that are coming through and as David said it is going to take a lot of work to work out which of those are deliverable and who will benefit. But we have quite a lot of opportunities in that space and although that may not be us that takes that forward, it may be, but it may not be. We think it is a lot of material for those interested in chemo prevention using drugs of cancer that they can work on and with luck deliver some new ways of preventing cancer that may be simply popping a pill every morning to take your risk right down to as close as zero as we can.  Helen: Thank you Ian. David, I think you had something to add here.  David: Thanks Helen. One area of prevention that we're really interested in Oxford and many others are is using the genetic alterations that we find in bowel cancers and other cancers as targets for vaccination. Now we know that gene alterations will cause abnormal proteins which while they might drive the cancer, make it grow or not die, can also be recognised by the immune system so the abnormal proteins can be recognised by the immune system as being foreign and as foreign they can be targeted by the immune system so the immune system will try and kill the cells carrying those alterations. And we know for some sub-sets of bowel cancers those alterations can be relatively predictable actually, they occur in quite a sizeable fraction of some sub-groups of bowel cancers.   And one area that we're particularly interested in at the moment and actively pursuing is using those targets where you need some additional work to demonstrate when they are particularly recognisable by the immune system. But to use these genetic alterations is potential targets for vaccination with the intention ultimately of preventing bowel cancer in at risk individuals or ideally in the full-term time the whole population. And we've received some funding from Cancer Research UK to pursue this line of research and we have a group working on this in Oxford and as I say many others do elsewhere.  Helen: Thank you David, yes I have a vested interest in this because my understanding is this work is aimed primarily at people with a genetic condition called lynch syndrome which predisposes the people who have inherited this gene change alteration to bowel cancer, womb cancer and other cancer. And I had womb cancer, as I think David you know, a few years back and discovered it was due to lynch syndrome and so it's really exciting that you're now looking at vaccinating preventing because yes I take aspirin every day, I have my colonoscopy every 2 years which have some effect on preventing these cancers but it's not 100% guaranteed. And I don't suppose it ever will be but having the vaccination in that armoury would be fantastic I think for future generations, it's very exciting and we look forward to hearing more about it.   Thank you Ian and David. I mean we've heard a lot there about preventing bowel cancer but I think moving back now to potential treatments, you know, we've heard from David how this study has shown a number of actionable findings but what are the next steps towards treatment? How can these findings be turned into real actions that will benefit those people diagnosed with bowel cancer in the future? Ian, perhaps you would like to pick up on this to start.  Ian: That step is one, you know, in which I'm not personally an expert but a lot of the newer treatments are based on the finding of so called driving mutations which are simply genetic changes that occur as the cancer grows and contribute to that growth and ultimately if it's not treated to the spread and dissemination of a cancer. And the fact that we have reported 250 which need validation but of which a large proportion are likely to be true drivers means that anyone of those can be a potential new target.   The criteria to be used for which of those mutations to pursue, which of those driver genes to chase up are quite complicated normally, depend on many things such as the interest of research groups and small and larger drug companies. And the similarity of those genes to other genes that have evolved and the processes that they make to go slightly wrong in the cancer.   So, there is also the issue that because these are uncommon, everybody talks a lot about personalised medicine or precision medicine, this would be truly precision or personalised medicine because a genetic change that was driving the cancer in only 1% of patients is obviously not a huge number of patients although bowel cancer is a common cancer so it's not a tiny number either. But it would mean investment at that level to benefit let's say 1 to 2% potentially of all patients with bowel cancer but I think that's a nettle we have to grasp. And I think our results are showing that most of the really common drug changes either have not yet been successfully targeted in treatment or are too difficult to target.   So, we're going to have to start looking at these less common genetic drivers and design strategies, inhibitors, you know, again that can be delivered to patients relatively straightforwardly in order to see whether they benefit the patients concerned. But there is this problem of getting enough patients enrolled in clinical trials where a change is only present in a relatively small proportion of all the patients with that cancer type.   Helen: Thank you Ian. Presumably if there is a relatively small number of patients the people who are looking at running these trials might be looking at perhaps international trials, would that be one way to go?  Ian: So, I think David can speak with more personal knowledge but there are international trial networks and there are collaborations along these lines already under way. I would hope that those could be made use of even more than they are already. There is, you know, a financial consideration for those developing new anticancer treatments which are, you know, high risk work and also the costs of setting up trials and enrolling people is not a trivial thing. So, I think those are hurdles that can be overcome but it would need a concerted effort to do that. Patients will play a major role in that and patient organisations as well as 100,00 Genomes and other similar projects.  Helen: Yes, thank you, David I don't know if you want to come in on that.  David: Yes, the challenge of testing therapies in small groups is a very real one and there is lots of interest at the moment in exploring alternatives to conventional clinical trials. And as we use more electronic patient records and we have pharmacy records so there is the potential to get those data from routine clinical practice and there is lots of investments and attention on that at the moment so called real world data which is always an interesting term as if patients in clinical trials aren't in the real world which of course they are.   But it's perhaps a little more cost effective sometimes in clinical trials, of course it does pose its own challenges in how you disentangle true treatment effect from other factors because there are many factors impacting on how long people with cancer live. But there is a lot of investment and effort going into that at the moment and it will be interesting to see how that develops over the coming years.  Helen: Turning to you Claire based on your experience how well do you think people with bowel cancer understand how genomes can help with their care and what support is currently available to them in this area?  Claire: I think the answer, as it is so often is, it's dependent on individuals and not just one individual. So, I think some patients are very motivated to know as much about this as possible and to understand and to know what the next steps may be in their own treatment that may be helped by this. Others don't want to have the same knowledge and want to be guided very much by their medical teams but I think oncologists obviously are at the forefront of this and we see at the charity … we have services at the charity that supports patients and we see lots of queries into our ask the nurse service where people have been given variable information about I suppose personalised medicine as Ian alluded to and how their very specific bowel cancer may be treated, so I think it varies from patient to patient.   There is support available so we have the ask the nurse service I alluded to. We have a brilliant patient forum actually and everybody in clinical practice will have seen this, patients often become more expert than anybody and they share advice and they're moderated forums that are a very safe place for people to ask questions where there is a moderator to ensure that it is made really clear that circumstances are individual.   And the same with the ask the nurse service because you don't have all the clinical information so it is about empowering people, so there is support available. I think the other thing that is really important is equipping specialist nurses with the knowledge that they need to support their patients. This is a really exciting area of evolution for bowel cancer particularly I think in all cancers at the moment but for bowel cancer I think things have changed fairly rapidly in recent years and specialist nurses really need support in knowing that they have up-to-date information to give their patients.   So, that's another challenge for us and any specialist nurses that might be listening to this podcast we have online education on genomics for specialist nurses. Just while we're talking about that and you mentioned lynch syndrome earlier, so there has been a lynch syndrome project as I'm sure you're aware where we're trying to get testing for lynch syndrome brought into local hospitals.   So, there was some funding via NHS England so that the testing be done at time of diagnosis, so a pre-test and then a final test if that's appropriate, for everybody diagnosed with bowel cancer to see if they have lynch syndrome. And in some trusts that has been done and in others it hasn't yet and the funding hasn't quite followed in the way that we need it to enable that to happen. It's vitally important, we think there are about 175,000 people in the UK with lynch syndrome and we only know about 5% of them. And this is a gene change that is an inherited gene change so we can do what we call cascade testing where we test family members and we can then employ preventative strategies to prevent people from developing bowel cancer.   So, it's a really important project, so I think as well as supporting patients with the information around the changes that are happening in this area we also need to ensure that we support the workforce and have investment there to enable the support of all the changes and the genomic landscape.  Helen: Absolutely Claire and so much resonates there with what you've said. Having myself had cancer discovered that was due to lynch syndrome, cascade testing offered to my family members so valuable. It turns out I inherited my change from my mum who is 83, has never had cancer, so I think that's a very good example of, you know, it doesn't necessarily mean that you will get cancer but actually on that point that you made about empowering patients I always have a right smile because there is my mum going off to all her other medical appointments because at 83 she sees quite a few people and she is always the one telling them about lynch syndrome and educating them because most of them haven't heard of it, so yes it's really, really important.   And that patient forum, you're probably aware of Lynch Syndrome UK, I don't have any involvement in that other than being a member but that is so valuable for people with a particular condition to go somewhere where they can talk to or listen to other people with a similar condition, really, really valuable.   Right, well I think circling back really to the 100,000 Genomes Project I think you touched on this earlier David but reflecting on what you and Ian have told us about your study what is it about the 100,000 Genomes Project bowel cancer dataset that made this work possible?  David: There are a few things, one of which and not least of which is the sheer size of the effort. So, to have whole genome sequencing for more than 2,000 individuals is previously unprecedented and we'll be seeing more of this now as we scale up our research efforts but at the inception of the project it was very, very ambitious and to be able to deliver that is a huge achievement. And the quality and breadth of the analysis is very strong as well.   And ultimately, you know, the former gives thanks to the people that were kind enough to donate samples to the 100,000 Genomes Project, they did so knowing that they almost certainly wouldn't benefit personally from their donation from their gift and that any benefits would be some way down the line and hopefully benefit others which is what we're seeking to realise now. But, you know, it's not a given when we treat people in the clinic so we're very, very grateful to those individuals.   And I think also to the scientists who worked incredibly hard over the last 5 years to deliver this work actually. So, having been part of the team and being lucky enough to be part of the team along with Ian we've had hugely motivated individuals that really have dedicated a large fraction of their working lives to delivering this project which I think is a fantastic achievement as well.  Helen: Thank you, thank you to all those participants who at a time when their lives probably were turned completely upside down by a cancer diagnosis were offered the chance to join the 100,000 Genomes Project and said yes. As you say most of them will have known that it won't have helped them but by donating their data, you know, it has allowed this work to happen and potentially it could change lots of people's lives in the future, so thank you to them.  Ian: Could I also just emphasise and agree with what David has said, I won't go through all the individuals by name, but if anybody wants to read the published report of the work there are several people on there, Alex Cornish is the first author, but many colleagues from an institute of Cancer Research, The University of Manchester, Birmingham, Leeds, other universities in London that all contributed, but also colleagues in the NHS and/or universities who recruited patients, collected samples, processed them etc and of course the people who did the preparation of the samples in genetics laboratories and actually did the sequencing and basic analysis too.   So, it is a truly huge effort across particularly all the cancer types which is particularly a complex collection given the fact the tumour is needed and a blood sample. It's quite difficult in a way to find a formal way of thanking them for all of this but without them it wouldn't have happened.  Helen: On that note I think we'll wrap up there. A huge thank you to our guests, Professor Ian Tomlinson, Clare Coughlan and Dr David Church for an enlightening discussion on the groundbreaking study published in nature. This research is set to reshape our understanding of colorectal cancer and pave the way for new possibilities in treatment and patient care.   If you would like to hear more like this please subscribe to Behind the Genes on your favourite podcast app. Thank you for listening. I have been your host, Helen White. This podcast was edited by Bill Griffin at Ventoux Digital and produced by Naimah Callachand. 

Look, is this project a mistake? Probably, but I will attempt to dethrone Sufjan Stevens and make this 50 states thing work! Anyway, today I bring you some really strange cases from California, including what may be the most terrifying looking UFO of all time, a case reminiscent of the film, The Fourth Kind, a mining couple plagued by a zapping UFO, and some orange stealing aliens! Sources: “Colusa (California) Close Encounter, 10 September 1976: Investigative Report, Part 1” by Brad Sparks, The APRO Bulletin, Vol 25, No 8, February 1977 “Colusa (California) Close Encounter, 10 September 1976: Investigative Report, Part 2” by Brad Sparks, The APRO Bulletin, Vol 25, No 9, March 1977 “Colusa (California) Close Encounter, 10 September 1976: Investigative Report, Part 3” by Brad Sparks, The APRO Bulletin, Vol 25, No 10, April 1977 “Colusa Report Corrections” by Staff Writer, The APRO Bulletin, Vol 26, No 1, July 1977 “The Happy Camp, California, Sightings - Part 1” by Paul Cerny, UFO Research Newsletter,  Vol 5, No 9, December 1977 - January 1978 “The Happy Camp, California, Sightings - Part 2” by Paul Cerny, UFO Research Newsletter, Vol. 5, No 10, February-March 1978 “They like Happy Camp, Part II” by Emilie A. Frank, The Dunsmuir News, September 1, 1976, Pg 3 “Focus: UFOs? You Better Believe It” by Dennis Rowedder, Daily Independent Journal, February 14, 1976, Pg. 61 “Expert: UFO was no phony” by Don West, The San Francisco Examiner, August 14, 1975 “Helen White appears on ‘Real People'” by Hazel Davis, UFO Newsclipping Service, No 126, January 1980 “The Redding, California, Mining Case” by Paul Cerny, The MUFON UFO Journal, No 125, April 1978 “A close encounter with alien claim jumpers: A dynamite tale” by Staff Writer, The San Francisco Examiner, February 5, 1978 “Humanoid Case with ‘Message'” by Richard Hall, The MUFON UFO Journal, No 143, January 1980 Theme song: "Ufo" by Floats, available on Soundcloud, iTunes and Spotify Logo designed by Megan Lagerberg

Genomics has changed considerably over the past 10 years, and we are now exploring how to integrate it into routine healthcare. In this episode, our guests reflect on this evolution and discuss how the key learnings from the past 10 years can shape the genomics ecosystem of the future. They highlight the importance of partnership across teams, organisations and participants, emphasising the importance of keeping participant and patient benefit at the heart of research, whilst also addressing the ethical and safe storage of patient data. In this episode, our host, Helen White, who is the Participant Panel Vice-Chair for cancer at Genomics England, speaks with Dr Rich Scott, CEO of Genomics England.   "Our goal is to ensure that everyone can benefit from the advancements in genomics, but this requires collaboration across disciplines and a commitment to ethical practices in managing and sharing genomic data."   You can read the transcript below or download it here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/How_can_we_work_in_partnership_towards_a_new_era_of_genomic_medicine_and_research.docx Helen: Welcome to Behind the Genes.  Rich: There's a whole new era I see coming in terms of the therapies that are directed at the causes of genomic conditions, both in rare conditions and in cancer, and thinking as we do that, about how we structure the system to generate evidence, and to respond to it, and have a conversation about what the right balance of evidence for patients to make a choice about their own care.  Helen: My name is Helen White and I am the Participant Panel Vice Chair for Cancer, at Genomics England. On today's episode I'm joined by Dr Richard Scott, Chief Executive Officer for Genomics England. And today we'll be discussing Richard's recent appointment as CEO, lessons learnt from the last ten years in the evolution of genomics in healthcare, and how these learnings will be taken forward in the next ten years. And we'll also visit the importance of keeping participant and patient benefit at the heart of research, as well as the ethical and safe storage of patient data. If you enjoy today's episode we would love your support: please like, share and rate us on wherever you listen to your podcast.   Before we dive into the interview with Rich, I wanted to take a moment to share my story and tell you a little bit about myself. I have been a member of the Participant Panel at Genomics England since 2018. It was the year before that when I was diagnosed with endometrial, or womb cancer, and was offered the chance to join the 100,000 Genomes Project, which felt like something positive at what was otherwise quite a scary time. It turns out that I have something called Lynch syndrome, that's a genetic condition that increases my chance of developing certain cancers, particularly womb and bowel cancer, which is actually a really useful thing to know as there are things I can do to reduce my chance of getting cancer; things like having regular colonoscopies and taking daily aspirin. I have now been on the participant panel for six years and one year ago I was appointed as Vice Chair for cancer. This is a new and developing role and I am excited to have so far helped recruit more people with lived experience of cancer to the panel and to be assisting Genomics England with connecting to organisations that advocate for people whose lives have been touched by cancer.   So that's enough about me. I am delighted to be joined today by Richard Scott, and I am very much looking forward to our conversation. Welcome, Rich.   Thank you. So Rich, you've recently been appointed CEO of Genomics England. Can you tell me a bit about your background and what brought you to this role?   Rich: It's a really good question and it's one that doesn't have a really very simple answer. I guess what it boils down to is I guess I've always had an interest, even as a child, for whatever reason, in genetics and genomics. I have also then always been drawn to things where I can have an impact and particularly the impact in healthcare and that's what took me to being a medical student. And I guess it's that combination of that particular interest in genetics and being able to see, even when I was at medical school I qualified in 2000 that this was an area of medicine that was going to be really important in the future. And then as I trained, as I did a PhD and as I saw the technology develop and change and then when I saw the UK government and the NHS investing in genomics in a really foresighted way, I found myself eight or nine years sitting at Great Ormond Street as a consultant in clinical genetics where I still practice, I still do one clinic a month there as a clinical genetics consultant seeing families with rare conditions.   But I could see when Genomics England was established that this was something, as I said, really foresightful where we could really collectively across the country make more of a difference together in terms of patient and healthcare outcomes. So I joined GEL eight or nine years ago initially in a subject matter expert role, and really found myself the more time it passed, understanding how working in my role at GEL and helping GEL be a really productive part of what is a busy genomics healthcare ecosystem in the UK, we can make a big difference, and that's the thing that just wakes me up in the morning, is realising how much there is left to do, being proud of the stuff we've done, the difference we've made to participants in our programmes already, but realising that many of those still need our support to do better and the big distance left to go before we really deliver on I think the long-term promise of genomics, and I feel my mixture of skills and experience make me really excited to be in the middle of that.   Helen: Thank you. Yes, it sounds like you've brought many skills and experience, and interesting to hear that as a child you already had that interest in genetics and where that's taken you. Can you tell me what being CEO Genomics England means for you? What are your aspirations for your first year in this position?   Rich: Well, I guess, as you can tell, I'm really excited to take on this role. As I said, as a doctor I'm always focused on the impact for patients and our participants and ultimately it's the broader health of the nation. And the role I see Genomics England playing and being able to play in the future, sort of building on that, the leadership position the UK's always had in genomics – you know if you look back to the discovery of the structure of DNA, the invention of sequencing technologies and also the clinical implementation coming from that government investment and the NHS investment, what excites me most about GEL is that we can be there, playing a critical role alongside others in that ecosystem, whether that's in the NHS, whether it's our participants and the patients who we're aiming to support academia and industry, to create a whole that's greater than the sum of the parts, and I genuinely feel that the UK remains uniquely placed to live out that potential that genomics has, engaging in the questions, not just you know, the scientific questions of: what could genomics test for? Or, how could this be implemented and is it cost-effective?  But also being able to have the nuanced conversation of what we all and our participants in the public and general, expect in terms of the care we receive or how our data is looked after, and getting that really balanced view on how we chart a path forwards where we can really see big differences being made in the future, and I think always being honest to ourselves about where we are today and that things don't come in spotting some position a long time in the future that we want to navigate to, but also being really focused on the here and now and what is possible and what is evidenced, and what the next set of evidence or discussions or conversations in the public we need to have to help navigate ourselves there and that's where at the moment our focus at Genomics England is both being very clear sighted on where Genomics could go, and also thinking very clearly about where we are today, and so very much at the moment for us it's about focusing on the life service we offer to the NHS and we're really proud to be part of a world-leading whole genome sequencing service, the first national health service in the world to be providing that in the context of cancer and rare disease, and so offering and providing our service that contributes to that.   Supporting researchers so that we can keep the flow of discoveries coming and also for example, making sure that our participants in existing programmes continue to get new answers as the science evolves. So, the last year more than 2,000 families had new findings fed back because of new knowledge that's accumulating, keeping that flow going. And then we've got three big research initiatives going on at the moment where we're really focusing on delivering around them. We've got a diverse data initiative where we're really focused on making sure the research library, the National Genomic Research Library, our participants are representative of the UK population, so the discoveries that we're supporting are relevant to everyone; our cancer initiative which is exploring the use of new sequencing technology in the context of cancer, and also looking at the use of image data and other modalities of data, alongside generic data to drive new discoveries.   And then the third initiative is our newborn genomes programme, where we're asking a big question through a research study to generate evidence to ultimately answer the question: should every baby when they're born be offered whole genome sequencing? Most pressingly to improve and broader the range of conditions that we can look for that are severe and treatable. So, this year we're very much focused on delivering on those promises that we've made to our participants and our partners and through those programmes and very much with an eye to the future thinking about what we need to change in terms of the use of underpinning technology, so that we know that we've got the potential to scale, to think about the broader use of genomics in years to come as evidence evolves.   Helen: So Rich, there have been many advances in genomics in the last ten years. What do you think are the big lessons from those last ten years, and what do you think the next ten years will look like for the genomics ecosystem, what impact will this all have on healthcare as we know it?   Rich: So, genomics has changed extraordinarily in the last ten years thanks to shifts both in the technology, particularly the sequencing technology but also some of the computing technology that's there to deal with the scale of data. Ten years ago we were talking about the 100,000 genomes project and beginning the project itself, but it was still very early in the use of whole genome sequencing, that's gone from something where the big question around the 100,000 genomes project was: can this technology be used in routine care in cancer and for rare conditions, and if so, how do we do that?   And we've learnt both I think about that specific question and as I mentioned, we're enormously proud to be part of enabling the NHS whole genome sequencing clinical service, so that has entered routine care. I think along the way the biggest lesson for me is actually one about this being about partnership and about working as a team across many different organisations and with our participants, and recognising that this isn't just about one set of questions, or it's not just about clinical or scientific questions, it's about joining everything up together back to that point around, so a discussion about what people expect – this is about doing stuff together and learning often quite complex lessons about practicalities is one things, for example, one of the really big lessons we learnt around the use of whole genome sequencing in cancer are just practical lessons about handling of tissue samples and the need to make sure the right fridges are available on the right corridor of a hospital, with plugs available to plug them into, through to questions around, as I say, people's expectations around how their data is stored, which it's used for, which again there's really strong precedent for, and as we explored, different uses of genomic technology, we shouldn't just take those previous answers for granted, we need to make sure we validate and check with people what their expectations are.   So I think that's the big one for me is sort of the number of different angles with which one explores questions and the fact that this is very much about doing it together. I think just one other piece which is so easy for us here to take for granted is that doing things at national scale with national scale investment from government, from other funders and from the NHS is absolutely critical and when you look across the world, we are in an extraordinarily privileged position here in this country because of that investment and because that investment recognises the need critically to join clinical care and research in a whole, where you recognise that you're doing multiple things at once, but joining them up rather than them being two worlds, is really, really critical, and we're really lucky to be able to do that at national scale.   So then thinking about what the next ten years might look like for the genomics ecosystem, I think lots of those things continue, so I think national scale and the need for ongoing investment to keep up our position at the forefront in terms of answering these big questions about the use of genomics in healthcare, and to where the evidence supports their implementation to roll them out and keep that link there between healthcare and research, and so making sure the systems talk to each other and I mean that in a digital sense as well as a human sense is absolutely critical.   And then, so in ten years' time what are the areas of healthcare that will have been impacted, or could have been impacted by genomics, I'm really pleased that we're doing a better job for families with rare conditions and people with cancer than we were ten years ago, I think there's a long distance left to run even in those settings for us to do better and to continue to learn, so we expect our major focus to continue to be in those areas where we know they can have an impact and there's more to do. We also then have the different areas where if the evidence pans out to support the use of genomics or if we can implement systems that can support it there can be a big sort of area of growth. For example, our newborn genomes programme is asking questions and developing evidence so that in the future policymakers can decide should that become part of routine care, and I think that's something that could have become part of routine care in the next ten years if the evidence supports it and if that's something that the public support.    If I were to pick one other area where there's a real potential for growth in the coming handful of years it's in something we refer to as pharmacogenomics. What that means is looking at your DNA code (genomics) to help make decisions about prescription of medicines and sometimes that's about avoiding these medicines in people who are at a higher risk of having an adverse reaction, or it's about tailoring the dose because of something about for example the way the person metabolises, chews up, the medicine and so can influence how much dose they need. That actually has an enormous potential; we all have variations in our DNA code that influence how we respond to or metabolise medicines. If you look across primary care, GPs and so forth, primary care physicians and in secondary care, hospital care, I think there's good evidence that actually probably half of all appointments, interactions in those settings, if you were to have DNA data available that could influence how prescription choices are made; sometimes that's about knowing that you're doing the right thing, giving the normal prescription, but sometimes it's about modifying it, that's an area where I think there's a real potential for growth and that's an area that the NHS also really recognise and we're exploring ways in which we might look into that and think about how that might be implemented, because actually a lot of the questions there are about how you make sure the right data, the right information is available to clinical teams and patients at the time that prescriptions are being made.   There's also real potential more broadly in thinking about more common disease settings, there's lots of work going on from various research studies looking at the value of what people sometimes refer to as polygenic risk scores or integrated risk scores, where we use genomics as an element of estimating risk for common diseases like heart disease or cancer, that's something where the evidence is being worked on and is developing, I think we'll see a lot of evidence come out in the coming years and I think that will then influence how we implement genomics to help as part of that risk estimation process, which is routine now in GP practices where you go for an NHS health-check they do it with lots of complicated stuff, at the moment not genomics, and we'll see how that plays out in the years to come.   So I think there's enormous room for growth where genomics where at the moment it's making an important difference to people with certain conditions that we can do better on. In the future I see it becoming very much more part of the routine day to day of healthcare. As we make that transition there's lots to work through about the evidence, the order in which that's done and the way in which we, for example, store data, and make people part of the choice about how their data is used and what I'm really excited about in Genomics England is the role we play in the middle of that, bringing our particular expertise around what we call bioinformatics, which is sort of managing genomic data at big scale, particularly national scale to support healthcare and research, generating evidence that can help inform policy, and also critically drawing things together into the conversation amongst different players in the ecosystem and participants in the public so that we can not just think about evidence in a sort of terribly scientific way but we think about it in the round.   Helen: That's really interesting to hear you speak a lot about getting that evidence because that's critical, but that takes a long time doesn't it, so for example with the generation study, the newborn study it's really important to measure the benefits of that if you're testing young babies, newborn babies for diseases that if you pick up a condition that condition can be treated and something can be done about it early rather than poor parents going through this diagnostic odyssey, but also it's that balance isn't it with not leading to any harm, so if a number of parents come out of that thinking their baby might get a condition and it never happens there's potential there isn't there. But I think in terms of the public understanding of how long it takes to get evidence and everything else that needs to go on in the background I don't think it's always particularly clear that that's a massive process that has to be gone through and there's a lot of work going on behind the scenes – you can't just do these things.   I think as patients/members of the public we're eager to get on and for change to happen and things to be better but it's a big, big process, but also good to hear that you talk about it being a collaborative approach, it's not just Genomics England, it's the NHS, it's members of the public and patient voices, it's other organisations working in partnership, it's a big undertaking.   Rich: No, it is and I think that one of the words you used there was impatience, and I think that's healthy and important to recognise, it can be easy, particularly for example as a doctor, sat in a clinic room to accept the status quo, and at the same time, one needs to recognise the complexity of the questions, the balance, the need to generate high-quality evidence to inform those opinions and I think combining both that sort of impatience and dissatisfaction with the status quo, and that mind-set about thinking really thoroughly and collaboratively about the right evidence that is needed to change policy.   Helen: Yes, really important that those patient voices are there from the beginning, from the planning of obtaining this evidence and that you're measuring the things that matter most.   Rich: One of the areas where I think we've seen that play out, another area where I really see the potential for growth in the future is much more genomics-enabled treatments. We and you and the participant panel have helped us think about there's a whole new era I see coming in terms of the therapies that are directed at the causes of genomic conditions, both in rare conditions and in cancer and thinking as we do that about how we structure the system to generate evidence and to respond to it and have a conversation about what the right balance of evidence for patients to make a choice about their own care, but also policymakers to make choices about funding, decisions and safety decisions, is really important and we've been supporting to a wider work in cancer in the UK called the Cancer Vaccine Launchpad, and likewise we're part of something we call the Rare Therapies Launchpad, where in those two areas we're exploring that, and that's another area I think of real potential in the coming years, and also real nuance as we construct a way of navigating that together and making the most of the potential, but not just sort of rushing in and pretending we know all of the answers at the outset.   Helen: And those launchpads are of particular interest to participants in the wider patient population, there are a lot of people and children with rare, ultra-rare conditions who are desperate for treatments that just aren't available right now, equally for cancer patients there's a big need isn't there for more effective treatments, fewer side effects, that target that person's particular cancer, so it's good news I think for the wider public.   It does seem that innovation and partnerships are crucial to Genomics England's activities so how does Genomics England ensure that participant and wider patient benefit are at the heart of these activities?   Rich: I think one of the really important things is actually governance is sometimes a boring word, sounds like it, but I think thinking about how we've structured the organisation and placed you, as the participant panel, as part of our governance to make sure that when we're thinking about for example access to data in the National Genomic Research Library, participants are sort of driving those decisions, it's an independent committee that makes those decisions with representation from our panel. One of the things is thinking about the governance and making sure that you as our participant panel hold us to account for the decisions that we're making, which I think is really critical.  I think then also as we've learnt a lot over the years, not always getting it right, about how we make sure that participants, or potential participants in the public are involved from the outset in the design of programmes because it always helps. I think certainly before I joined Genomics England I think I would have been unsure about the best ways of going about that and that brings with it sometimes a nervousness. I think the main advice I would say to people listening is to have confidence that just getting stuck in and have conversations is the way to do it. There are then also all sorts of expertise that we've really benefited from being to bear in terms of ways of doing that engagement work and that will come; the first thing is to have the confidence and the desire to put that at the centre of how you decide where your focus should be and how you design programmes.   Helen: I think Genomics England has been very successful with that by integrating that patient voice from the very early days and here we are what eight years on I think now, and yes, hopefully we'll be there for some time to come yet, as long as Genomics England exists. So Rich, with more and more health data being stored, how do we ensure that this sensitive personal data is stored and used safely and ethically across the genomics ecosystem. And actually while we're on this question, can you just explain what genomics ecosystem means, because we use that term I think quite a lot, but I think it's not necessarily understandable to the wider public? Rich: What I mean when I talk about it is I mean the mixture of different people, whether that's sometimes organisations, us, Genomics England, the NHS, the NIHR, National Institute for Health Research; industry partners whether they're people who are from pharma companies or from biotech, academic researchers, participants in programmes – everyone who comes together to work on genomics in the UK and a bit like the word as it's used in biology, it's a sort of busy ecosystem with all sorts of people playing their own role and then working together, and so I think it's a really important thing to recognise that we're part of that and in fact it's one of the things I love most about my role at Genomics England is thinking about all of the different partners that we need to work with and to those outside it I think it can also be a bit intimidating, because it's hard to keep up with who on earth everyone is. So then thinking about the question of how we make sure that data's stored and looked after and used in the ways that people expect and safely and so forth, I think that's absolutely at the heart of my role and our role. And I think one thing is actually always sort of starting at the: why are we doing this? What benefits are we seeking to bring to people? Is that what they expect? What have they signed up for if you like? But that's in a research study or when they've decided to say yes to having a particular test, which is the same in any part of medicine. And if we use that to drive our decisions, that's what's so critical. And so that's where thinking about programmes we run, and also the things that we think might be worth something that we should prioritise in the future is always first driven by the benefit that you might be bringing, weighing up the costs and the potential downsides and harm that might be caused by the use of genomic data in that way and that's what should always drive things, and there isn't a one-size-fits-all, you know, genomic data should be used and stored in this way and that's one of the things that I think making sure that participants and the public are at the centre of the conversation is absolutely critical, it turns out that genomic data is very much like health data at large in many senses and it's very precious for those reasons. It is also special in a few ways. One of the ways that's sort of peculiar if you like is that pretty much the DNA sequence, the genome, that you're born with, is the same one that you hold throughout your life, that's different from say if you do a blood count or something that varies for various reasons over your life and most things in medicine do change quite meaningfully over a much shorter time period. One of the things about the DNA code: A) it makes it more precious because it's very much about you, your whole life; also it makes it more useful and reuseable in many ways, so one of the things that we think about a lot more in genomics is about the storage and reuse of data on an ongoing basis through the lifetime. And I do think that that model in certain settings and potentially more broadly as evidence accumulates, may well be the path that we take forward where you consider your genomic data part of your health record where it can be used and reused. And what we need to do is explore why you would in the first case generate someone's DNA sequence, and what sort of sequence, is it a whole genome or less than a whole genome? What would you use it for in the first place when you first generate it? And what other uses could there be to support the healthcare and have you involved them or the public more generally in decisions about how it's used? Because we do, as I said, see the potential for genomics being just becoming part of the fabric if you like of healthcare, good healthcare, the best healthcare.   Linked to that is the point on research as well, like where people are happy for it, holding their genomic data and understanding how that impacts on longer term health outcomes, something we'll continue to learn about for years and years. So I think the first point is about focusing on the why and whose data it is, one's own genome belongs to you, it doesn't belong to anyone else, what people are happy with and consent to and expect and then always holding that in mind as one makes the choices is critical. I've talked about how we think the governance and the involvement of the participant panel is really critical for that as well. And then it also comes down to doing in various ways, the job that people would expect in terms of, for example, that safety piece, using the very latest tooling to make sure that it's held in a secure way, that it's backed up so that it won't be lost etc. and bringing sort of the right, very good minds around some of those more technical questions, but always with the expectations of the people whose genomes they are in mind and to say are we living up to their expectations, are we doing what they would expect?   So, Helen, I wondered if I could ask you a couple of questions. The first one I wanted to ask is what you're hopeful for in the coming years as a participant panel member?   Helen: Thank you. I've actually already posed these questions to some of the other panel members, so I'll try and make sure I include their responses here as well as mine, but I think it's important to hear from everybody, not just me, Rebecca Middleton and Emma Walters have recorded their responses as well. I think the four main things that panel members are hopeful for is the coming years, the first is equitable access to whole genome sequencing, basically everybody who needs whole genome sequencing should get access to it regardless of where they live, their income, ethnicity or disability, so that's something that we're hopeful will get better over the years.   We know this is essential to improving healthcare, to improving outcomes for patients and generally for sort of greater inclusivity and in genomic research, we want as well as Genomics England, the data is the National Genomics Research Library to be representative of the population as a whole, not just the people who 1) are offered, and 2) agree to have their data in the library. And also, obviously the more data that is held in that library, the more opportunity there is for research across those rare and ultra rare conditions and rare and less common cancers, where it's all about numbers, you need numbers of sets of data in order to draw things together and make conclusions to look for patterns.  And the other thing which I guess comes more under the umbrella of the NHS is that the panel is quite keen, they want everybody who's undergoing genomic testing to receive good support and after care, I think regardless of whether that testing is via the NHS or as part of a research study, sometimes it will be both, but that's for the patients at the coal face that is obviously critically important.  The second, I think broad theme, coming from the panel members' responses is that I think you've mentioned this already, is increased understanding of genomics amongst the general public is really important – there's a need to demystify genomics and to generally improve public awareness of its benefits and to get those conversations going around its regulation and its ethical use, but to do that you need to get meaningful engagement from a wide range of people, you know, that's not always straightforward, there are lots of challenges there, it's all about prioritising inclusivity, accessibility, to make sure you get diverse views and perspectives on genomics and on genomics research.   The other thing that came out very strongly from the responses which we have talked quite a bit about already is about this individualised healthcare. I think we as a panel are very hopeful that there will be this shift towards treatment strategies that are tailored more to the individual and their specific health condition, rather than a one-size-fits-all approach, we want effective treatments that will minimise side effects but also through the use of pharmacogenomics, to make sure if there's a risk of a severe, sometimes life-threatening side effect that that can be identified and that individual doesn't have that treatment either at all or has a lower dose, so it's not so toxic.   And let's hear from Emma who talks about this.  Emma: My hope is that we move to a truly individualised healthcare system and I'm really excited to see how in particular pharmacogenomics changes the healthcare landscape. For a long time we've gone with a one-size-fits-all approach, and that's easy to deliver on a large scale basis that the NHS works on, but we know fundamentally that's not how patients work, so to be able to consider individualising medication and knowing which won't work, interests and excites me.   Helen: So the panel is also very hopeful about the development of those innovative therapies, and you talked about the rare therapies launchpad and the cancer vaccine launchpad, because those offer real hope for treating previously untreatable conditions and generally improving accessibility to treatments. And we're also hopeful that there will be a much better understanding of diagnosis of cancer, through things like the multi-model programme, because although there's lots and lots of research going on with cancer there's still a long way to go to have more effective treatments and to improve diagnosis of cancer.   And then just finally just in response to your question, patient and public involvement, this is what the participant panel is all about, we are a group of individuals whose lives have all been touched by either a rare condition or by cancer currently, either we've had that condition ourselves or it's affected our loved one, and we do bring these diverse views and perspectives to Genomics England and I think we have a crucial role in influencing its decisions about what it does with participant data and who has access to that data. It's critically important that Genomics England listens to what matters to the people whose data it holds and who do that, as Rebecca here explains.  Rebecca: Genomics is a fast-moving science and it has the impact to change lives and healthcare for future generations, but genomics is a science of people and therefore the only way you can truly understand the limitations and opportunities of it is to talk eye to eye to the very people it will impact, and not everyone will agree on everything. But how we understand genomics and its power to transform healthcare, our own and that of our children and the ones we love, can only progress at the pace of the people that it will benefit. It's a simple equation but it's not maths and indeed not science: we are all different and unique, our emotions, experience and history will be wrapped up in our viewpoints and thoughts, and that's where the panel comes in, representing and advocating for the very many different voices of genomic healthcare, ensures Genomics England is stronger, healthcare design is more meaningful and research is more impactful.  I have no doubt that the panel of the future will continue to be heard and understood at Genomics England, and I hope it continues to grow to reflect more diverse voices and experiences and continues to be the people inside the science.   Helen: Finally, the panel is also hopeful for increased public and patient involvement in genomics research, this is integral for shaping research both academic and commercial, it helps with identifying research priorities, developing new treatments, basically getting that voice of the patient in there to tell researchers what's the most important and what matters to them.  Rich: So another question Helen, how do the panel feel about the changing genomics landscape? Helen: A good question and I think overall it's a balance between excitement and hope on the one hand, and a bit of apprehension and caution on the other. So the panel is really excited about the advances going on in healthcare, we're entering an age now where we're promised a much more proactive, as opposed to reactive approach to healthcare. You were talking earlier Rich, about having your genome sequence, and this is something that you have for life, it's like your passport, your fingerprint, so from infancy to old age you've got this data which is held somewhere which holds so much promise of predicting if you might develop a disease, whether you might react badly to a drug, so ultimately it offers great potential to improve outcomes for patients, their families and the NHS. Again, we spoke earlier about this holds so much promise for producing the diagnostic odyssey that so many parents go through when the children are born with a condition that doesn't have a diagnosis, potential to diagnose things like cancer a lot earlier where it's more treatable and to prevent disease as well, I know that's something Genomics England isn't specifically looking at, but through screening programmes, using things for example like circulating DNA which may be able to pick up that there are things going on and picking things up earlier means that those things can be dealt with earlier.  I mean thinking of my own personal example, I know I have Lynch Syndrome, I know that I am at risk of developing bowel cancer now, but that means I can do something about it. So I have my colonoscopies every two years, I take aspirin every day because that reduces my chance of getting bowel cancers and I'm much more symptom-aware, so having that knowledge up front is very helpful in being able to move forward and reduce my chance of getting an advanced cancer.  The panel is also very excited about the ongoing collaborations and the novel therapies that are being developed through the rare therapies launchpad, these offer a lot of hope for treating previously untreatable conditions, and improving accessibility to treatments, and obviously more targeted treatments for cancer, you know, we'd need more effective treatments for cancer but with reduced side effects, so that in a nutshell, those are the other positive sort of things that the panel feel excited about. Where they're slightly more apprehensive or concerned, I mean they do acknowledge that there are challenges ahead and there are big concerns about the NHS's ability to cope with increase in demand for genomic testing and particularly worries about education and training of healthcare professionals in genomics, how do they effectively communicate research findings or results to patients if they don't have a broad understanding of genomics?  And then finally, let's hear from Emma.  Emma: I think I'm excited but cautious. I think it's really important to acknowledge that the research being undertaken is groundbreaking and the vast majority of clinicians have very little to know genomics education, and translating these findings into tangible benefits for participants is so very important, and something I think we've really got to make sure we don't lose sight of.   Helen: We talked earlier about awareness among the public about genomics and we do feel that there's a need to drive education forwards, you know but this is challenging, given the rapid pace of developments that we've spoken about, I think even for the panel members who I would say are relative experts in genomics now it's hard to keep up to date, so how do we do that moving forwards? We've talked about security of data, we understand there are moves to link more genomic data sets both nationally and internationally and that clearly has significant benefits because that brings bigger numbers of patients data together, but opens up potential risks in terms of security, so how do we make sure that the security of that data is as good as it is currently when it's held in one pot in Genomics England Research Library.   And just a couple of final concerns that were flagged by panel members, there is some apprehension regarding potential misuse with genomic data by insurance companies; we're given a lot of reassurance about that but there are concerns that could potentially lead to the most vulnerable in society being unable to get affordable cover if they're found to have genomic changes that mean they are at risk of conditions or have certain conditions and there are also concerns about the ethical implications of AI in diagnosis and clinical decision making, you know, AI is obviously a fantastic thing for looking at patterns amongst a big lot of data, but how accurate is it and where does the human come in, in terms of decision making?   So those are, I think, the broad concerns from the panel. I don't know if you have any thoughts on those, Rich? Rich: I think the big thing to say is I think having the participant panel there, you said in the middle of that, become collectively quite expert and you recognise that. Having the ability to have these complex nuance conversations and have people share that and speak directly to us about it I think is the biggest thing – lots of those points there made by the panel, I think both things that we have very much in our mind about things that one needs to balance and focus on, and there are also things that we already talk about which is reassuring I think as well, we talk about with the panel. I think one of the things for us as well is sort of being clear on some of the things where there are really clearly well-established red lines, for example, that point on insurance, but that is very clear and part of our role is making sure that that is there and people can feel comfortable in that context to understand that.  I think the main thing that I would say is thank you to you Helen, and to all of the panel and all of our participants because I said earlier, this is a team thing and you are all very much part of the team and we would not be able to do our jobs in any way, I wouldn't even say effectively, I would say with the relevance, which is the thing that we drive for, the relevance to have impact for people's lives whose data we hold and will hold in the future. And so thank you for being part of the team. Helen: Thank you. And I think thank you to Genomics England for having the foresight to create the participant panel in the first instance, it was there from the get-go and I think a really great opportunity for all of us to be involved in this, to have our voices heard and listened to, so thank you.  We'll wrap up there. Thank you for joining me today and thank you for discussing your appointment as CEO for Genomic England, and your view on what the genomics ecosystem might look like over the next ten years. If you would like to hear more like this, please subscribe to the Behind the Genes, on your favourite podcast app. Thank you for listening. I've been your host, Helen White. This podcast was edited by Bill Griffin at Ventoux Digital, and produced by Naimah Callachand. 

Helen and Danni are using their experiences to help improve womb cancer research. Helen and Danni are both volunteers for the Peaches Womb Cancer Trust Patient Voices group. Sarah, Helen and Danni talk about How the group grew from one voice to Patient Voices The difference they have made to research especially around language and ethics Why contributing to research can help bring meaning and comfort following a cancer diagnosis What research teams could be doing to work more effectively with patients   Find out more Read the full show notes on the podcast website  Connect with Helen via LinkedIn or email Find out about Peaches Trust and Peaches Trust Patient Voices   Contribute to the 50th Episode by 30 July 2024 Leave a voice message via SpeakPipe   About Research Adjacent Follow the podcast on LinkedIn and Instagram Sign up to the podcast newsletter Email Sarah a comment, question or suggestion Leave Sarah a voice message   Theme music by Lemon Music Studios from Pixabay

Questions to Ministers Hon MARAMA DAVIDSON to the Minister of Foreign Affairs: Does he agree with Associate Professor of Law Treasa Dunworth, who said about the International Court of Justice ruling in the case against Israel under the Genocide Convention that New Zealand "has a legal obligation to do what it can to ensure that Israel complies with the court's orders"; if so, what action is the Government taking to fulfil its legal obligation? Hon Dr MEGAN WOODS to the Minister of Climate Change: Has he sought or received advice on the transport-related emission reduction impacts of the draft Government Policy Statement on land transport; if not, why not? SUZE REDMAYNE to the Minister of Finance: How much will the Government spend this year on financing its debt? TANGI UTIKERE to the Minister of Transport: Does he stand by all his statements and actions? DEBBIE NGAREWA-PACKER to the Acting Prime Minister: Does he stand by his Government's policies and statements? TANYA UNKOVICH to the Minister for Resources: What announcements has he made regarding petroleum exploration? Hon Dr AYESHA VERRALL to the Minister for the Public Service: Does she stand by her answer, "I make that promise", said in response to the question, "Will you promise no cuts to any front-line services"; if so, why has Fire and Emergency New Zealand been told their front-line services are "not necessarily immune" from Public Service cuts? NANCY LU to the Minister of Housing: What recent announcements has he made on the Government's housing priorities? Hon JULIE ANNE GENTER to the Minister of Transport: Will it be possible for the New Zealand Transport Agency and councils to deliver integrated transport projects that include other improvements, such as busways, bus lanes, public transport stops, and footpaths as part of larger road or highway projects, under his draft Government Policy Statement on land transport? TOM RUTHERFORD to the Minister of Transport: What recent announcements has he made about transport investment in New Zealand? HELEN WHITE to the Minister for Small Business and Manufacturing: Does he stand by his statement that "There is a problem with late payments and long payment terms by large market players"? CAMERON BREWER to the Minister of Justice: What progress has the Government made in relation to restoring law and order?

Tonight on The Huddle, Nick Mills from ZB's Wellington Mornings and BRG director Georgina Stylianou joined in on a discussion about the following issues of the day- and more! Winston Peters held an impromptu press conference about the ongoing coalition discussions, and claimed 'speed is of the essence'. Is Winston getting impatient?  Labour's Helen White is under pressure to defend her campaign, after emails leaked showing her volunteers blamed Hipkins, and the Greens for her election result? What do we think of this? LISTEN ABOVESee omnystudio.com/listener for privacy information.

The official results in the general election have finally been released - but it's likely recounts will be requested in some electorates. On Friday National lost two seats after the count of special votes, while Te Pāti Māori gained two, and the Green Party has gained another.   The margins in some electorates are in the single digits: - Te Pāti Māori candidate Takutai Tarsh Kemp won the Tāmaki Makaurau electorate by just 4 votes over Labour's Peeni Henare. - Labour's Helen White beat National's Melissa Lee in Mt Albert by just 20 votes  - And Labour candidate Rachel Boyack won Nelson with a majority of 29 votes over the National candidate Blair Cameron. Melissa Lee and Blair Cameron have indicated they may request a recount. Chief electoral officer Karl Le Quesne spoke to Susie Ferguson.  

I wasn't expecting to come home to a fully formed functional government.  After all, the results of the specials were only announced on Friday and there are still a couple of electorates where it is absolutely worth going through and counting the votes again.    As expected, National lost two seats after the count of special votes, while Te Pāti Māori gained two, and the Green Party has gained another.    The margins in some electorates are in the single digits:  - Te Pāti Māori candidate Takutai Tarsh Kemp won the Tāmaki Makaurau electorate by just 4 votes over Labour's Peeni Henare.  - Labour's Helen White beat National's Melissa Lee in Mt Albert by just 20 votes   - And Labour candidate Rachel Boyack won Nelson with a majority of 29 votes over the National candidate Blair Cameron.  Melissa Lee and Blair Cameron have indicated they may request a recount and really, why wouldn't you if you were them?    But nonetheless whatever the results, Christopher Luxon and David Seymour and Winston Peters are joined together in an uncomfortable throuple and they're just going to have to deal with one another.    Not the result Christopher Luxon wanted, but then it's not up to him to dictate the makeup of Parliament.  It's up to the voters, and this presumably is what they wanted.    Winston Peters has been around.  This is not his first rodeo.    So he'll be looking to parlay his 8 seats from 6.08 per cent of the votes into a shiny baubles and pretty trinkets - mainly for himself but no doubt he'll be looking for a few pieces of costume jewellery for his MPs.    LISTEN ABOVESee omnystudio.com/listener for privacy information.

So who's in and who's out? Final results showed Labour's Peeni Henare lose Tamaki Makaurau by just 4 votes and Labour's Helen White win Mt Albert by just 20 votes. Our reporter Louise Ternouth looks at the winners and losers.

Last Monday when I was hosting afternoon talkback I got a pithy little text that said "We've got rid of the clownshow and here comes the 3-ring circus."  It's pretty funny because it's pretty true and it's happened.  The counting of the special votes has confirmed that Luxon and Seymour need Winston and as we all know Seymour and Peters are not BEST friends. Critics warn of a conservative coalition of chaos. That won't be so but only if it's a coalition of compromise. It could be worse. Labour, the Greens, New Zealand First and Te Pāti Māori together have 63 seats. In a parliament of 123, that means they could have theoretically stolen the election. So thank Chris Hipkins for ruling Winston Peters out before the election.  Now the horse-trading begins and the fight for influence between ACT and New Zealand First and the question exists as to who National will owe more to. The larger party, ACT, or the smaller party, New Zealand First, that gives them the final vital votes to form the government.  It's the age-old question of coalitions — the saga of the tail and the dog.  Meanwhile, the special votes have no good news for Labour. The final upshot is that just 26.9 per cent of New Zealand voted for the party. A sad result after over 50 per cent supported the party a short 3 years ago.  The ultimate sign of the disaffection is Mt Albert where Helen White has held on but with an even smaller majority than on election night. In 2020 the majority was 20 thousand votes. Now it's just 20. A brutal swing which shows the verdict on the party, the policies and the candidate. There is no way that Helen can continue to say she's done well.  And despite all the concessions Labour made to their Māori caucus and the policies that gave many New Zealanders conniptions, Māori have turned around and given their seats to Te Pāti Māori. The ultimate snub was to Labour's deputy leader Kelvin Davis, who has lost his seat. And if he's true to his word then he'll have to resign. Which can I say might be a blessing for Labour as it tries to rebuild.  So here we are with a parliament of 122 seats about to become 123 under the bizarre vagaries of MMP. Certainly, if we had First past the Post this would have been a more clearcut process of government formation. But we don't.  We have what we have and it's now over to our political leaders to show the maturity to stitch together a stable government to lead us through a period of time that becomes more complicated as time goes by. See omnystudio.com/listener for privacy information.

National will need New Zealand First's Winston Peters alongside Act's 11 seats to form a government after the special votes come in.   National has lost two seats, taking its 50 seats down to 48.   Labour's Te Atatu MP Phil Twyford avoided being another victim of the so-called "bluenami", holding onto his seat by just 131 votes.   Labour's Rachel Boyack also clawed back Nelson by 29 votes, while its Mt Albert candidate Helen White managed to hold on to her seat by just 20 votes.    Newstalk ZB Political Editor Jason Walls says some of the seats were even closer to the wire.   He told James Daniels and Tyler Adams Te Pati Maori's Takutai Tarsh Kemp won the Tamaki Makaurau seat by a razor-thin margin.  “And she won it by a majority of just four votes. Not 40, not 400, just four votes. I mean it's incredibly thin.” The Maori Party took two seats from Labour - Tamaki Makaurau and Te Tai Tokerau. LISTEN ABOVESee omnystudio.com/listener for privacy information.

Mount Albert's Greens candidate says the narrow margin in the seat shows elections are no longer two-horse races. Labour's Helen White has won on early numbers by just over 100 votes. It's traditionally a Labour stronghold, previously held by Jacinda Ardern, David Shearer, Helen Clark - and Michael Savage. White's blaming her slim-win on the Greens splitting the vote. Ricardo Menendez-March says his Party's proud of its record result. "No one, not the Greens, not National or Labour, can take any electorate for granted." LISTEN ABOVESee omnystudio.com/listener for privacy information.

CHRISTOPHER LUXON to the Prime Minister: Does he stand by all of his Government's statements and actions? HELEN WHITE to the Minister of Housing: What recent progress has the Government made to boost public housing in Auckland? NICOLA WILLIS to the Minister of Revenue: Does she agree with the Minister of Finance's statement that he was "too definitive" when, prior to the election, he ruled out changes to the bright-line test, and will the Government's subsequent changes to the bright-line test result in some New Zealanders paying a capital gains tax on their family home? DAVID SEYMOUR to the Prime Minister: Does he stand by his response "Yes, I do" to my question yesterday asking if he stood by "the factually incorrect statement he made to Newshub on Saturday 'The idea that you'd make a joke about blowing up an ethnic minority is something that isn't really that funny' ", and does he consider his own statements that the Ministry for Pacific Peoples' expenditure "isn't acceptable" to be criticising an ethnic minority? Dr ANAE NERU LEAVASA to the Minister of Health: What announcement has she recently made regarding improving the mental health of New Zealanders? Hon MARK MITCHELL to the Minister of Police: Does she stand by her statement, "It is my view that New Zealanders feel safer"; if so, why? STEPH LEWIS to the Minister of Agriculture: What has the Government done to support New Zealand's farmers and growers? TAMA POTAKA to the Associate Minister of Housing (Maori Housing): Does he stand by all his statements and actions in relation to Maori housing? ARENA WILLIAMS to the Minister of Police: What actions have Police taken to crack down on retail and organised crime? BROOKE van VELDEN to the Minister of Health: Is it acceptable that as of July this year there have been 3,361 cases of staff being physically assaulted in Te Whatu Ora facilities, and is it acceptable that this is only 98 fewer assaults than the 3,459 physical assaults that occurred in the whole of 2022? Hon EUGENIE SAGE to the Minister of Local Government: Has he seen the recent report from the Helen Clark Foundation on sponge cities and, if so, has he sought advice about encouraging water-sensitive urban design and sponge cities as part of the three waters reforms? ANNA LORCK to the Minister of Commerce and Consumer Affairs: What benefits have New Zealanders gained from the Financial Markets (Conduct of Institutions) Amendment Act 2022?

Questions to Ministers CHRISTOPHER LUXON to the Prime Minister: Does he stand by all of his Government's statements and actions? HELEN WHITE to the Minister for Sport and Recreation: What has been the impact on New Zealand of co-hosting the FIFA Women's World Cup? Hon EUGENIE SAGE to the Minister for Oceans and Fisheries: Does she agree with the statement in the State of our Gulf 2023 report, "recent events have underscored the precarious nature of the situation and the ecological tipping points we seem intent on testing"; if so, does she consider that the Hauraki Gulf Fisheries Plan is an adequate response to the situation? SORAYA PEKE-MASON to the Minister of Health: What has the Government done to support the health workforce? NICOLA WILLIS to the Minister of Finance: Does he stand by all of his statements and actions related to Government tax and spending decisions? INGRID LEARY to the Associate Minister of Finance: What is the Government doing to ban foreign buyers from the New Zealand residential property market? ERICA STANFORD to the Minister of Immigration: What percentage of all accredited businesses have had a post-accreditation check completed since the Accredited Employer Work Visa was introduced, and what percentage of Accredited Employer Work Visas logged with Immigration New Zealand have had a verification check completed since applications opened? VANUSHI WALTERS to the Minister of Police: What updates has she seen about the Police's use of laws to target gangs and organised crime? SIMEON BROWN to the Minister for Pacific Peoples: Is she confident that taxpayers' money is being spent appropriately at the Ministry for Pacific Peoples? ANNA LORCK to the Minister of Commerce and Consumer Affairs: What recent evidence has he seen that the Commerce Commission is acting in line with the Government's expectations? MARK CAMERON to the Minister of Agriculture: What advice, if any, has he requested from his officials about the Global Dairy Trade Price Index falling by 7.4 percent overnight, and what impact does he expect this price fall will have on New Zealand's economy? Hon MARK MITCHELL to the Minister of Police: Does she stand by her statement, "It is my view that New Zealanders feel safer"; if so, why?

Questions to Ministers CHRISTOPHER LUXON to the Prime Minister: Does he stand by all of his Government's statements and actions? HELEN WHITE to the Minister for Arts, Culture and Heritage: What announcements has she made about supporting Auckland's St James Theatre? SIMON COURT to the Minister of Transport: Does he agree with former Minister of Transport Hon Phil Twyford, who said in March 2018, "Solving Auckland's traffic gridlock is also important for the rest of New Zealand with congestion in the city between 2015 and 2017 estimated to have cost the economy between $1.3 billion a year in lost productivity", and has congestion become better or worse since then? NICOLA WILLIS to the Minister of Finance: Does he stand by his statement in relation to the decision not to progress his tax proposal for Budget 2023 that "I wouldn't have put so much work into it if I didn't think that it had merit. But I also am a team player"; if so, approximately how many hours of officials' time went into developing these tax proposals that were rejected? SHANAN HALBERT to the Minister for Infrastructure: What progress has the Government made in addressing New Zealand's infrastructure deficit? CHRIS BISHOP to the Associate Minister for Social Development and Employment: What is the total amount spent from the December 2017 quarter onwards on Emergency Housing Special Needs Grants to date, and is she satisfied with the Government's performance on housing? IBRAHIM OMER to the Minister for the Public Service: What recent announcements has he made about strengthening New Zealand's cyber-security readiness and response? Hon LOUISE UPSTON to the Minister for Child Poverty Reduction: Does growing up in a benefit-dependent home contribute to child poverty; if so, is she concerned by the increase in children living in benefit-dependent homes under this Government? RICARDO MENÉNDEZ MARCH to the Minister for Social Development and Employment: Does she agree it's unfair that young people on the benefit are eligible for almost $44 less every week than people 25 and up? ANAHILA KANONGATA'A to the Minister of Police: What recent milestones have been reached on the roll-out of the Tactical Response Model? Hon MARK MITCHELL to the Minister of Corrections: Does he stand by his statement, "we have safely reduced the prison population"; if so, why? Hon PHIL TWYFORD to the Minister of Commerce and Consumer Affairs: What action is the Government taking to ensure Kiwi consumers are treated fairly by their banks, insurers, and credit unions?

Questions to Ministers SORAYA PEKE-MASON to the Minister of Health: What announcements has the Government made about its long-term vision for the health of New Zealanders? CHRIS BISHOP to the Associate Minister for Social Development and Employment: How many applicants on the Housing Register, if any, indicated they were living in a car at the time of application in June 2023, and how does this compare to October 2017? JAMIE STRANGE to the Minister of Justice: What recent announcements has the Government made about increasing accountability for young offenders? Hon MEKA WHAITIRI to the Minister of Climate Change: Does he stand by all the Government's statements and actions regarding engagement with Maori landowners on the review of the emissions trading scheme? ERICA STANFORD to the Minister of Education: Does she stand by her statement that "my bottom line is to ensure our young people are getting the education they need and deserve", and does she believe the 85 percent of year 8 Pacific students who are not achieving at curriculum level 4 or above in maths, according to the 2022 NMSSA data, are getting the education they need and deserve? CAMILLA BELICH to the Minister of Immigration: What recent announcements has he made regarding working holiday visas? MATT DOOCEY to the Minister of Health: Does she stand by all of her statements and actions in relation to the release of health data by Health New Zealand? ANGIE WARREN-CLARK to the Minister for the Community and Voluntary Sector: What recent announcements has she made about modernising the charities sector? TONI SEVERIN to the Minister of Corrections: Does he think it is acceptable that, as at 31 May 2023, 2,191 sentenced prisoners had attended a rehabilitation programme during the 2022/2023 year, 4,140 fewer than attended rehabilitation programmes in the 2017/2018 year, and how many sentenced prisoners attended a rehabilitation programme during June 2023? HELEN WHITE to the Minister of Commerce and Consumer Affairs: What updates can he report about the New Zealand Claims Resolution Service? SIMON WATTS to the Minister of Revenue: Does he stand by his statement on the Government's proposal for a wealth tax that "As is clear from the papers, I supported it", and does he think Inland Revenue was right to say a wealth tax would "generate a range of economic costs and other risks"? Hon JULIE ANNE GENTER to the Minister of Transport: Is reducing greenhouse gas emissions from transport still a priority for this Government?

Questions to Ministers INGRID LEARY to the Minister of Finance: What are the priorities for Budget 2023? CHRISTOPHER LUXON to the Prime Minister: Is he satisfied with the outcomes taxpayers are getting from the increase in Government spending from $76 billion in 2017 to $129 billion in the current financial year? ARENA WILLIAMS to the Minister for Maori Crown Relations: Te Arawhiti: What recent announcement has the Government made regarding Matariki celebrations? CHLÖE SWARBRICK to the Minister of Finance: Does he agree with Labour MP Grant Robertson, who said in 2014, "We will ensure that all New Zealanders get a fair go by reforming monetary policy and by ensuring that everybody pays their fair share with a tax policy where higher-income earners actually pay their tax and actually pay their fair share"; if so, is that what we can expect tomorrow? HELEN WHITE to the Minister of Housing: What action is the Government taking to increase the supply of public housing? NICOLA WILLIS to the Minister of Finance: Does he stand by his statement that savings and reprioritisations in Budget 2023 will, for the most part, go "toward funding agencies' existing cost pressures", and what steps, if any, will the Budget include to reduce cost pressures for everyday taxpayers? NAISI CHEN to the Minister for the Digital Economy and Communications: What recent announcements has the Government made on expanding provincial connectivity? Hon MEKA WHAITIRI to the Minister of Revenue: Does he stand by his recent statement, "We have hard data confirming fundamental unfairness in our tax system"; if so, what specific policies, if any, has he proposed to Cabinet to address unfairness in the tax system? DAN ROSEWARNE to the Minister of Commerce and Consumer Affairs: What progress can he report on the work he is doing on the pricing of groceries? ERICA STANFORD to the Minister of Education: Does she stand by all her statements and actions? BROOKE van VELDEN to the Minister of Health: Is she confident that New Zealanders are able to see their GP when they need to, or enrol with a GP at all? Hon MARK MITCHELL to the Minister of Police: Does she stand by her statement, "It is my view that New Zealanders feel safer"; if so, why?

Questions to Ministers NICOLA WILLIS to the Minister of Finance: Does he stand by all his commitments on tax, and has he met those commitments? SHANAN HALBERT to the Associate Minister of Education (Maori Education): What recent announcements has he made regarding pay for kaiako and kaiawhina working in kohanga reo? CHRIS BAILLIE to the Minister of Education: How many teaching days were lost to industrial action by teacher unions in term 1 2023, and how many teaching days does she expect to be lost in term 2 2023? SARAH PALLETT to the Minister of Education: What milestones have recently been met in the Government's period products in schools programme? Hon PAUL GOLDSMITH to the Minister of Justice: Does she agree with the Prime Minister's statement on electoral law that "There's absolutely no change to the principle of one person, one vote. Our elections are still going to be one person, one vote for the councils, for general elections", and does she stand by all her statements on electoral law? Dr EMILY HENDERSON to the Minister of Justice: What announcements has she made about improving victims' experiences in the justice system? Hon LOUISE UPSTON to the Minister for Social Development and Employment: Why, when comparing the December 2022 quarter to the September 2017 quarter, were 49,377 more people receiving the jobseeker benefit but 37,551 fewer people receiving case management? RICARDO MENÉNDEZ MARCH to the Minister for Social Development and Employment: What steps, if any, is the Government taking to review hardship assistance and civil defence payments that have not been increased in nearly 20 years to ensure these meet the needs of whanau affected by floods, cyclones, and other natural disasters? ERICA STANFORD to the Minister of Education: On what date did she first become aware that her answer to an oral question on 22 February 2023 was incorrect, and did she attend a meeting with her staff on 9 February referred to in an email sent by her office to the Ministry of Education stating, "FYI, the Minister's office are looking to potentially release the Term 3 attendance data early next week. Something we can chat about at our meeting later today"? IBRAHIM OMER to the Minister of Defence: What recent announcement has the Government made about New Zealand's support for Ukraine? TONI SEVERIN to the Minister of Corrections: Can he confirm that of the 4,605 sentenced prisoners in Corrections facilities as at 31 March 2023, over 90 percent did not attend a rehabilitation programme during that month, and what implications does failing to rehabilitate prisoners have for the safety of New Zealanders? HELEN WHITE to the Minister of Revenue: What were the main findings of the Inland Revenue Department's report on the effective tax rate paid by high-wealth individuals?

Mike & Karen are joined by Special Advisor on Household Food Waste for WRAP, Helen White, for an enlightening discussion on the connection between food waste and water waste that is bursting with useful tips and tricks.    Get in touch with the show with any of your questions or comments: podcast@ccwater.org.uk   TIMESTAMPS   0:01 - Introduction and hellos 2:54 - The benefits of... Peecycling? 6:39 - Helen joins the show and explains the work of WRAP 12:35 - The mechanisms within the world to help reduce waste 18:00 - The task of developing pro-environmental behaviour 20:42 - Long-term vs. short-term goals 23:00 - The role of ‘embedded water' 37:42 - Helen's personal water use 45:00 - Final goodbyes and recommendations   SHOWNOTES    WRAP

Questions to Ministers BARBARA EDMONDS to the Minister of Finance: What recent reports has he seen on the New Zealand economy? CHRISTOPHER LUXON to the Prime Minister: Does she stand by all of her Government's statements and actions? TAMATI COFFEY to the Minister of Housing: What actions has the Government taken to achieve better housing outcomes for the people of Rotorua? DAVID SEYMOUR to the Prime Minister: Does she stand by all her Government's statements and policies? NICOLA WILLIS to the Minister of Finance: Has he been instructed by the Prime Minister to look through the things he has on his agenda to ask himself whether "either from a spending perspective and investment perspective, or just from a focus perspective, those are things that we should be prioritising at this point in time"; if so, what initiatives, if any, has he identified should no longer be prioritised? CAMILLA BELICH to the Minister of Education: What reports has he seen about numbers of people undertaking vocational education and training? Hon PAUL GOLDSMITH to the Minister of Justice: Is she confident the Government has the correct priorities in Justice? NAISI CHEN to the Minister of Tourism: What reports has he seen on New Zealand's tourism recovery? ERICA STANFORD to the Minister of Immigration: Why were nurses and midwives not placed on the straight-to-residence pathway of the Green List in May, and on what date did he first receive advice, if at all, that the retention rates of migrant nurses and midwives are no longer a concern? HELEN WHITE to the Minister of Transport: What recent announcements has he made about futureproofing New Zealand's transport system? SIMON WATTS to the Minister of Local Government: Did she receive advice from the Department of Internal Affairs on 25 October raising the possibility that Hon Eugenie Sage would pursue entrenchment of provisions in the Water Services Entities Bill via supplementary order paper and stating the Government would need to decide whether to support it; if so, how does she reconcile that with her answer to me in oral questions on 6 December, "We were made aware of the details of the SOP at the same time as he was"? TEANAU TUIONO to the Minister of Education: Does he think the wages of rural school bus drivers in Aotearoa are fair?

Questions to Ministers CHRISTOPHER LUXON to the Prime Minister: Does she stand by all of her Government's statements and actions? Hon EUGENIE SAGE to the Minister of Conservation: What, if any, options for protecting public conservation land from mining is she considering? HELEN WHITE to the Minister of Finance: What recent reports has he seen on the New Zealand economy? NICOLE McKEE to the Minister of Justice: Does she agree with reports that the managing director of Cultural Reports NZ said that "even if a report costs up to $6,000, if it leads to a lengthy prison sentence term being reduced by say, a year, the fiscal benefits alone are huge"; if so, is prioritising fiscal benefits over victims consistent with a "victim-centric approach"? RACHEL BROOKING to the Minister of Energy and Resources: What actions is the Government taking to make fuel markets more resilient, sustainable, and competitive? NICOLA WILLIS to the Minister of Finance: Does he stand by his statement about the COVID-19 Response and Recovery Fund that "The Fund is not there to be used for any old project in the never-never. It is to provide support and stimulus to recover and rebuild from COVID-19"; if so, does he support the draw-down and redirection of $72.3 million to help cover unfunded Department of Internal Affairs three waters work? TERISA NGOBI to the Minister for Social Development and Employment: What updates has she seen on the take-up of the Training Incentive Allowance? Dr SHANE RETI to the Minister of Health: Does he stand by all his statements and actions? SHANAN HALBERT to the Minister of Transport: What recent announcement has the Government made about the bus driver workforce? Dr JAMES McDOWALL to the Minister of Police: How many, if any, businesses in Hamilton have had assessments completed under the Retail Crime Prevention Programme, and of those, how many have had installations of protective equipment completed, if any? MELISSA LEE to the Minister for Broadcasting and Media: Does he stand by all the Government's views and actions regarding Aotearoa New Zealand Public Media? WILLOW-JEAN PRIME to the Associate Minister of Local Government: What recent announcement has the Government made on rural water supplies?

Restraints of trade. They're mentally, financially, professionally draining.  And far too often they're enforced on vulnerable workers who aren't paid enough to survive the restraint period, who can't afford to take legal action, and end up trapped in jobs that aren't good for them.  Great news then that Labour MP Helen White is championing the cause - her member's bill banning restraints for low wage workers has been plucked from the ballot box.  If passed it would mean restraints imposed on employees earning less than three times the minimum wage would be void. We talk to Helen White about the latest on the bill now!See omnystudio.com/listener for privacy information.

In this week's Big Green Money Show, Dragons' Den's Deborah Meaden and 5 Live's Felicity Hannah find out about the scale of food waste in our homes, restaurants and businesses.It's sparked by a question from listener Wade in Shropshire, answered by Helen White from the environmental organisation WRAP, who helps Deborah & Fliss find out all about food waste in our homes.They then hear from the co-founder and CEO of Mexican restaurant chain Wahaca, Mark Selby, about the challenges around reducing food waste in restaurants.Finally, they meet Alex Vlassopulos, co-founder of Kitche, a home food waste reduction app that can help us keep track of what's in our fridges and cupboards.Tell us what you think, tell us what you do to try and cut down on food waste and talk about some of the issues raised by using the hashtag #GreenMoneyShow on Twitter. Or email the team at GreenMoney@bbc.co.uk.Links: lovefoodhatewaste.com wrap.org.uk/taking-action/food-drink kitche.coWith Deborah Meaden and Felicity Hannah.Production team: Lexy O'Connor, Luke Wilson, Gareth Jones, Justin Bones, Natasha Johansson.

Questions to Ministers CHRISTOPHER LUXON to the Prime Minister: Does she stand by all of her Government's statements and actions? HELEN WHITE to the Minister of Finance: What recent reports has he seen on the New Zealand economy? JAN LOGIE to the Minister of Housing: Is she satisfied with the Government's progress on accessible public housing? JAMIE STRANGE to the Minister for Building and Construction: What progress is being made to reduce critical shortages in the supply of plasterboard? NICOLA WILLIS to the Minister of Finance: Does he agree with ANZ that "high inflation is likely to remain with us for some time yet"; if so, does he still stand by his May statement that "the short term challenge of inflation is significant"? DAVID SEYMOUR to the Minister of Finance: Why did the Crown provide an indemnity to the Reserve Bank against losses from the Large-Scale Asset Purchase programme, and what is the Crown's maximum liability that it could be forced to pay the bank as a result of the programme? MARJA LUBECK to the Minister of Immigration: What recent reports has he seen about critical workforce support for Kiwi businesses? Dr SHANE RETI to the Minister of Health: How many people, if any, waited longer than four months to see a specialist, and how many, if any, waited longer than four months for surgery, in the 12 months to June 30 this year? Dr EMILY HENDERSON to the Minister of Justice: What legislation is the Government progressing to reduce delays in the Family Court? PENNY SIMMONDS to the Minister of Education: Does he stand by his statement regarding the Te Pukenga forecast deficit of $110 million, "I've also been clear the projected deficit was too high and that more work needed to be done there"; if so, what work has been done to reduce the deficit? NICOLE McKEE to the Minister of Police: Is he satisfied with the Police's firearms administration ability, given there were over 3,000 licensed firearms owners waiting at least four months for their license renewals in June 2022, and does he believe that licensed firearms owners should be satisfied with these wait times too? TAMATI COFFEY to the Minister for Emergency Management: How is NEMA helping to build a safe and resilient New Zealand which is ready to respond to emergencies?

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Questions to Ministers CHRISTOPHER LUXON to the Prime Minister: Does she stand by all of her Government's statements and actions? HELEN WHITE to the Minister of Finance: What recent reports has he seen on the New Zealand economy? NICOLA WILLIS to the Minister of Finance: What advice, if any, has he received about how much more interest each year someone with a $700,000 mortgage would be required to pay on a renewed mortgage today compared to the start of last year, and what impact does he expect rising interest rates will have on the cost of living? NICOLE McKEE to the Minister of Justice: Does she stand by her statement that she will bring "a very victim-centric" approach to her new job; if so, will she commit to advocating for an increase in the funding available for victims in the next Budget to support her approach? Dr TRACEY McLELLAN to the Minister of Tourism: What response has he seen from the tourism industry following the announcement to remove pre-departure testing? Hon MARK MITCHELL to the Minister of Police: Does he stand by his statement, "we do acknowledge that, particularly when it comes to gangs, there is escalating tension there"; if so, when did the Government first recognise that gang tensions were escalating? ARENA WILLIAMS to the Associate Minister of Health (Maori Health): How is the Government supporting Maori primary and community care providers to lift their capability, capacity, and service sustainability? ANDREW BAYLY to the Minister for Building and Construction: When was the Government first made aware of the nationwide Gib shortage, and when does she expect to implement any recommendations made by yesterday's reported "high level taskforce"? JAMIE STRANGE to the Minister for the Digital Economy and Communications: What recent announcements has he made about improving connectivity in rural New Zealand? CHRIS BAILLIE to the Minister of Police: What did he mean when he said yesterday, "I think the work she was doing around culture change in the police was very important and I hope that we'll be able to continue that", and does he believe that the current culture of police is completely focused on catching criminals? Hon JULIE ANNE GENTER to the Minister of Transport: Does he stand by his statement that "Investment in green transport options is a triple win for climate action - it reduces traffic congestion, promotes a healthy, active lifestyle and clears up the air around us"; if so, how does that factor into his consideration of the options for mass rapid transit in Wellington? CAMILLA BELICH to the Associate Minister for Workplace Relations and Safety: What announcement has the Government made about supporting new parents?

Questions to Ministers BROOKE VAN VELDEN to the Minister of Housing: How many Kainga Ora homes in new developments would not meet the requirements of the Healthy Homes Standards heating formula, as mentioned in a Cabinet paper released on 3 December 2021, and how much extra funding, if any, would it cost to bring these developments up to the standards required by the heating formula? HELEN WHITE to the Minister of Energy and Resources: What action is the Government taking to decarbonise Auckland's harbour ferries? CHRIS BISHOP to the Associate Minister of Housing (Public Housing): How many people are on the State housing waitlist now compared to September 2017, and has she received advice on when that number will return to the levels of September 2017? GLEN BENNETT to the Minister for Social Development and Employment: What recent announcements has she made about Care in the Community? Hon LOUISE UPSTON to the Minister for Social Development and Employment: Does she stand by all her statements and actions? ARENA WILLIAMS to the Minister for Maori Development: What reports has he seen on education and employment outcomes for rangatahi Maori? Hon MARK MITCHELL to the Minister of Police: Does she stand by her statement, "I reject the premise that gang tensions have increased under this Government's watch"? TEANAU TUIONO to the Minister for COVID-19 Response: Does he remain committed to ensuring that the Government's response to COVID-19 is informed by the best available scientific evidence; if so, what is his response to an open letter by more than 150 doctors and scientists calling for additional protections, particularly in schools? MARJA LUBECK to the Associate Minister of Education: What recent announcements has the Government made about supporting regular attendance and engagement in education? PENNY SIMMONDS to the Minister of Education: What, if any, is the net financial deficit of Te Pukenga forecast for 2022, and how much more or less is it than the actual Institutes of Technology and Polytechnics sector deficit in 2019 prior to the establishment of Te Pukenga? GREG O'CONNOR to the Minister of Transport: What recent announcements has he made about supporting greater access to driver licensing testing and training? TONI SEVERIN to the Minister of Corrections: Is he confident in the performance of Corrections; if so, how does he explain a 29 percent increase in prisoner-on-staff assaults from November 2021 to February 2022, despite there being a decrease in sentenced prisoners?

Well, surprise surprise, it seems the Queen of kind is not so nice after all. Estranged MP Louisa Wall mounted a media offensive over the weekend, speaking out on her resignation from the Labour Party and appointment to a cushy ambassadorial style job that was created just for her. At the weekend, Luisa Wall told media that as long as Jacinda Ardern is leader she would never be appointed to cabinet or have influence. She told Jack Tame that she fell out with the party's leadership and felt that she wasn't welcome in the caucus. Today Jacinda Ardern said she was offered a good list position and she was indeed in the caucus. Until she wasn't, of course. Jacinda Ardern also said that as leader of a parliamentary party it is important to have an inclusive and united team. So, from this we can take it that Louisa was not considered a team player and so was firstly depowered and then ignored. The reasons that the leadership and Ms Wall fell out are between them but it appears to date right back to the time that David Cunliffe beat Grant Robertson in a leadership spill. It is well known that the PM and Mr Robertson were part of the ABCs. Otherwise known as the Anybody But Cunliffe club.  With Louisa Wall in the Cunliffe camp, it shows you how long grudges can be kept in this party. That's the major takeaway.   This Labour Government promised much including a kinder more inclusive way of doing politics. The actions surrounding Louisa Wall shows that this party is just as tribal and feral on internal enemies as any other political party. It shows that Jacinda Ardern does not tolerate dissenting voices. Indeed, she'd rather have incompetent ministers as long as they're loyal. And for exhibiting all this I find it very curious that the story didn't make the TV 1 News last night. It is also telling that a position was magicked up out of thin air for Louisa Wall to give her some honour in resignation. I've never liked the use of taxpayers' money to facilitate removing an enemy of the Prime Minister. It smacks of a cavalier attitude toward our hard-earned tax dollars. Along with Helen White's criticism of the Auckland police it shows all is not well in the party. One thing is for sure, as the polls fall and the lower placed MPs start to see their jobs disappearing, there will be more cracks appearing in the public facade of the Labour Party. 

Questions to Ministers SHANAN HALBERT to the Minister of Research, Science and Innovation: What recent announcements has she made about New Zealand's commitment to global vaccine development? SIMON COURT to the Minister of Local Government: Does she believe the Three Waters reform programme will result in better outcomes for ratepayers; if so, why have so many councils rejected Three Waters? VANUSHI WALTERS to the Minister of Foreign Affairs: What recent actions has she taken to support further sanctions against Russia? Hon SIMON BRIDGES to the Minister of Finance: Does he agree that "Families across Aotearoa are struggling to make ends meet as the cost of living rises, and they are being made to make tough calls over the basics", as stated in RNZ's report Whanau across Aotearoa struggle with basics as costs rise yesterday; if not, why not? GINNY ANDERSEN to the Minister of Police: What recent reports has she seen regarding the disruption of organised crime? CHRIS BISHOP to the Minister for COVID-19 Response: Does he stand by all his statements and actions in responding to COVID-19? HELEN WHITE to the Minister of Transport: What recent announcements has he made about support for the aviation sector as New Zealand continues its reconnection with the world? Hon LOUISE UPSTON to the Minister for Social Development and Employment: How many people, if any, received jobseeker support for one year or longer according to the September 2017 Ministry of Social Development quarterly statistics and how many people, if any, received jobseeker support for one year or longer according to the December 2021 Ministry of Social Development quarterly statistics? ANAHILA KANONGATA'A-SUISUIKI to the Minister for Pacific Peoples: What is being done to improve opportunities for Pacific students in Aotearoa New Zealand's schools and universities? Hon PAUL GOLDSMITH to the Minister for Workplace Relations and Safety: Does he stand by all his statements? TEANAU TUIONO to the Minister of Energy and Resources: Does she think that a nearly 60 percent increase in the combined profits of the four major electricity companies suggests the electricity market is delivering fair power prices for New Zealanders? MARK CAMERON to the Minister of Climate Change: Is he confident that New Zealand's primary industries have all the tools at their disposal to offset emissions, and does he believe there will be a significant cost increase to farmers from the emissions pricing schemes proposed in the He Waka Eke Noa discussion documents?

Questions to Ministers Dr DUNCAN WEBB to the Minister of Finance: On what date will Budget 2022 be delivered, and what will its priorities be? CHRISTOPHER LUXON to the Prime Minister: Does she stand by all of her Government's statements and actions? Dr ANAE NERU LEAVASA to the Minister of Health: What recent announcements has he made about online mental health support for parents? Hon SIMON BRIDGES to the Minister of Finance: Does he stand by all of his statements and actions on spending in Budget 2022? Hon EUGENIE SAGE to the Minister of Foreign Affairs: Will Aotearoa New Zealand be supporting a target of protection for 30 percent of the world's oceans in negotiations on the Global Oceans Treaty at the United Nations in March; if not, why not? BROOKE VAN VELDEN to the Minister for COVID-19 Response: Does he stand by all of the Government's statements and actions? TERISA NGOBI to the Associate Minister of Housing (Public Housing): What recent announcements has she made regarding the regulation of property managers? NICOLA WILLIS to the Minister of Housing: Did a Cabinet minute of 12 March 2021 note that policy proposals brought to Cabinet "risk leading to increased rents, which could have negative impacts on child wellbeing and child poverty", and how much, in dollar terms, have national median weekly rents increased since the Government's housing package was announced in March 2021? HELEN WHITE to the Minister for Economic and Regional Development: What announcements has he made about supporting the events sector? ERICA STANFORD to the Minister of Immigration: Does he stand by all his answers in question time yesterday; if so, can he confirm the date the immigration instructions were amended to include the border exception for 200 rural contractors that was announced by Minister O'Connor on 12 December last year? SHANAN HALBERT to the Minister of Internal Affairs: What progress has she seen on the Government's investment in protecting New Zealand's heritage and archival documents? SIMON WATTS to the Minister of Local Government: Does she stand by all her statements and actions in relation to Three Waters reform, and is she still committed to the legislated "all in" approach to Three Waters reform?

CHRIS BAILLIE to the Minister for Workplace Relations and Safety: Will the Government further progress Fair Pay Agreements; if so, why, given it was not the preferred option of his own officials? NICOLA WILLIS to the Minister of Housing: Does she stand by the then Minister of Housing's statement in December 2017 that “home ownership will become more affordable for New Zealand families”, and why hasn't the Government delivered on this commitment? IBRAHIM OMER to the Minister of Education: What new action is the Government taking to support schools to provide learning environments for their students that are “warm, dry and fit for purpose'? Hon SIMON BRIDGES to the Minister of Finance: Does he stand by all of his statements and actions on inflation? SHANAN HALBERT to the Minister for Treaty of Waitangi Negotiations: What progress has been made on historical Treaty of Waitangi settlements in 2021? TEANAU TUIONO to the Associate Minister of Housing (Public Housing): Does she stand by her statement that the Government is “monitoring what happens with rent rises and will take action if necessary”; if so, does she think action is necessary now? HELEN WHITE to the Minister for Economic and Regional Development: What decision has the Government recently made about New Zealand securing the Sail Grand Prix competition? CHRIS BISHOP to the Minister for COVID-19 Response: What regions were listed in the preliminary view submitted to the Director-General of Health as being able to enter the COVID-19 Protection Framework at green, and was this preliminary view ever shared with his office? NAISI CHEN to the Minister of Transport: What reports has he seen on coastal shipping? HARETE HIPANGO to the Associate Minister of Health (Māori Health): Has he asked the Director-General of Health to release all the data as requested by the Whānau Ora Commissioning Agency yet; if not, why not? SARAH PALLETT to the Associate Minister of Health: How will the Smokefree 2025 Action Plan help achieve the goal of a Smokefree Aotearoa New Zealand? MARK CAMERON to the Prime Minister: Does she stand by her statement that “This government will foster a more open and democratic society. It will strengthen transparency around official information”; if so, is she confident that the Government has fulfilled this commitment in relation to releasing information about Groundswell NZ?

HELEN WHITE to the Minister of Finance: What recent reports has he seen on the New Zealand economy? RICARDO MENÉNDEZ MARCH to the Minister for Social Development and Employment: Does her Government's commitment to “overhauling the welfare system” include ensuring low-income communities are supported to deal with the effects and costs of climate change; if not, why not? ANDREW BAYLY to the Minister of Finance: Has he reassessed any of his spending plans, since Statistics NZ reported inflation is 3.3 percent, and most banks are now predicting swift increases in interest rates over the next year? ANAHILA KANONGATA'A-SUISUIKI to the Minister of Housing: What recent announcements has she made about support for Community Housing Providers? CHRIS BISHOP to the Minister for COVID-19 Response: Will the Government administer 8,016,768 doses of the COVID-19 vaccine by the week of 21 November 2021 as set out in the Ministry of Health's “Original cumulative vaccinations model”, and does he have confidence in the vaccine roll-out? ARENA WILLIAMS to the Minister for Social Development and Employment: How is the Government delivering more pathways into mahi for job seekers? BARBARA KURIGER to the Minister of Energy and Resources: Will she apologise to Genesis Energy for her statement that Genesis made a “commercial decision” when it came to how much generation to have online on Monday night, and what are the terms of reference, if any, for the review she has instructed the Ministry of Business, Innovation and Employment to undertake? IBRAHIM OMER to the Associate Minister of Education: What recent progress has she seen in education on implementing Recommendation 36 of the Royal Commission of Inquiry into the terrorist attack on Christchurch masjidain on 15 March 2019? RAWIRI WAITITI to the Minister of Housing: Does she have confidence in the Ministry of Housing and Urban Development? MARJA LUBECK to the Minister of Transport: What recent announcements has he made on the Pūhoi to Warkworth motorway? DAMIEN SMITH to the Minister for Racing: Is he satisfied with the operations of the TAB? TIM VAN DE MOLEN to the Minister for Building and Construction: Does she stand by all of her statements and actions?

Hon JUDITH COLLINS to the Prime Minister: Does she stand by all of her Government's statements and actions? HELEN WHITE to the Minister of Finance: What recent reports has he seen on the New Zealand economy? Hon MICHAEL WOODHOUSE to the Minister of Finance: What actions, if any, does the Government intend to take in response to the Treasury report entitled He Tirohanga Mokopuna 2021: Consultation on the draft content of the Treasury's combined Statement on the Long-term Fiscal Position and Long-term Insights Briefing? PAUL EAGLE to the Minister of Housing: What announcements has she made about transitional housing in Wellington? BROOKE VAN VELDEN to the Associate Minister of Housing (Māori Housing): How many houses are projected to be built, and by when, at the land at Ihumātao? ANAHILA KANONGATA'A-SUISUIKI to the Minister for Social Development and Employment: What recent expansions has she launched to support more graduates into employment? Hon LOUISE UPSTON to the Minister for Social Development and Employment: Does she have confidence the Government is doing all it can to make sure children in emergency housing are safe; if so, why? RACHEL BROOKING to the Minister for Oceans and Fisheries: What announcements has the Government made regarding oceans and fisheries? RICARDO MENÉNDEZ MARCH to the Minister for Social Development and Employment: How many people, if any, receiving unabated main benefits will not see a net increase of $20 in their bank account weekly as a result of the July increase to main benefits? CHRIS BISHOP to the Minister for COVID-19 Response: What percentage of people living in residential care have not had at least one dose of the COVID-19 vaccine, and is he satisfied with the vaccine roll-out in New Zealand? RACHEL BOYACK to the Minister of Transport: What progress has been made on replacing the Interislander ferries? NICOLA WILLIS to the Associate Minister of Housing (Public Housing): When, if ever, have there been more people on the public housing register waiting to be housed than there were in the official figures for March 2021, and by what date will she commit to a reduction in the number of people waiting to be housed?

DAVID SEYMOUR to the Prime Minister: Does she stand by all her Government's policies and actions? HELEN WHITE to the Minister of Finance: What recent reports has he seen on the New Zealand economy? Hon JUDITH COLLINS to the Prime Minister: Does she stand by all of her Government's statements and actions? Hon EUGENIE SAGE to the Minister of Climate Change: Will the Government follow the final advice of He Pou a Rangi, the Climate Change Commission? Dr ANAE NERU LEAVASA to the Minister for COVID-19 Response: What recent announcements has he made on the roll-out of the vaccination programme? Hon MICHAEL WOODHOUSE to the Minister of Transport: Does the Government expect to deliver all the transport projects it announced in January 2020 as part of the NZ Upgrade Programme; if not, which projects will not go ahead as originally announced? GINNY ANDERSEN to the Minister of Police: What recent reports has she seen regarding Police's efforts to disrupt organised crime? RAWIRI WAITITI to the Prime Minister: Does she stand by all her Government's statements and actions? STEPH LEWIS to the Minister of Agriculture: What recent announcements has he made about integrated farm planning? TIM VAN DE MOLEN to the Minister for Building and Construction: Does she stand by her statement, when asked if Budget 2021 is wrong in respect of the Residential Earthquake-Prone Building Financial Assistance Scheme, that “on the face of it, it would appear to be”? TĀMATI COFFEY to the Minister for Māori Development: What steps has the Government taken to support Māori housing aspirations? SIMON WATTS to the Minister of Health: What is the total number of staff vacancies across all district health boards, and what specific plans, if any, does he have to address staffing vacancies in the New Zealand health system?

Hon JUDITH COLLINS to the Prime Minister: Does she stand by all of her Government's statements and actions? ARENA WILLIAMS to the Minister of Finance: What are the Government's priorities for Budget 2021? Dr SHANE RETI to the Minister of Health: Does he stand by all of his statements and actions? DAVID SEYMOUR to the Prime Minister: Does she stand by her statement that “Inequality has progressed almost as rapidly as development”? Dr GAURAV SHARMA to the Minister for COVID-19 Response: What investment has the Government made in New Zealand's COVID-19 vaccination programme? ANDREW BAYLY to the Minister of Finance: Does he stand by all of the statements he has made in his past Budget day speeches? HELEN WHITE to the Minister for Arts, Culture and Heritage: What recent reports has she seen on the arts and culture sector? CHRIS BISHOP to the Minister for COVID-19 Response: What advice, if any, has he sought on the Controller and Auditor-General's report Preparations for the nationwide roll-out of the Covid-19 vaccine, and what is his response to the comment in the report, “I am not yet confident that all of the pieces will fall into place quickly enough for the immunisation programme to reach the level of vaccinations required for the Government to meet its goals”? Dr ANAE NERU LEAVASA to the Minister of Foreign Affairs: What support is New Zealand providing to the Pacific to help them recover from the impacts of COVID-19? CHRIS BAILLIE to the Minister of Education: Does he agree with the Prime Minister, who said in relation to New Zealand history being taught in schools, “This Government is committed to a better New Zealand that we can all be proud of and which recognises the value of every New Zealander”? RICARDO MENÉNDEZ MARCH to the Minister for Social Development and Employment: Does she believe the welfare system should aim to alleviate hardship or eliminate hardship? ANGELA ROBERTS to the Associate Minister of Education: What is the Government doing to promote bullying-free environments in schools?

Dr DUNCAN WEBB to the Minister of Finance: What recent reports has he seen on the New Zealand economy? Hon JUDITH COLLINS to the Prime Minister: Does she stand by all of her Government's statements and actions? DEBBIE NGAREWA-PACKER to the Prime Minister: Does she stand by all her Government's statements and actions? Hon MICHAEL WOODHOUSE to the Minister of Finance: Will the Government deliver on all of its past Budget commitments? TĀMATI COFFEY to the Minister of Housing: What recent announcements has the Government made about responding to housing need in Rotorua? Hon JULIE ANNE GENTER to the Minister of Finance: Does he stand by his statement that the “better than expected economic recovery” gives him “more scope to keep a lid on debt and look towards a faster reduction in that debt”; if so, why is he proposing paying down debt at a time of record low interest rates, rather than investing that money in ending child poverty and reducing emissions? JO LUXTON to the Minister of Education: What progress has the Government made in supporting schools with property maintenance projects? DAVID SEYMOUR to the Minister of Health: When the Ministry of Health engaged with the board of the Laura Fergusson Trust, did it offer any funding? Hon LOUISE UPSTON to the Minister for Social Development and Employment: Does she have confidence that all people staying in taxpayer-funded emergency housing are safe; if so, why? TERISA NGOBI to the Minister of Transport: What recent announcement has he made about pathways to a net zero emission transport sector? SIMEON BROWN to the Minister of Police: Is she concerned gang membership in New Zealand is continuing to increase; if so, does the Government have a target to reduce the number of gang members? HELEN WHITE to the Minister of Commerce and Consumer Affairs: What recent announcement has he made about changes to KiwiSaver?

ARENA WILLIAMS to the Minister of Finance: What recent reports has he seen on the New Zealand economy? Dr SHANE RETI to the Minister of Health: Does he stand by all of his statements and actions in relation to a Māori Health Authority? HELEN WHITE to the Minister of Research, Science and Innovation: What recent announcements has she made about New Zealand's first Government-funded space mission? MELISSA LEE to the Minister for Broadcasting and Media: What measures, if any, is he taking to ensure the $55 million allocated to NZ On Air's Public Interest Journalism Fund will not lead to political bias? SHANAN HALBERT to the Minister of Education: What reports has he seen about enrolments in tertiary education and training? BROOKE VAN VELDEN to the Minister of Foreign Affairs: What communications, if any, has she or her officials had with representatives of the Chinese Government regarding the term “genocide” in relation to the Xinjiang Uyghur Autonomous Region? Hon PAUL GOLDSMITH to the Minister of Education: Does he stand by all his policies and actions in education? ANAHILA KANONGATA'A-SUISUIKI to the Minister for Arts, Culture and Heritage: What steps has she taken to support positive outcomes for New Zealand music? Hon MARK MITCHELL to the Minister for the Public Service: Why has he frozen some Public Service workers' pay for the next three years? JAN LOGIE to the Minister of Finance: Does he stand by his statement, “A turn to austerity measures will simply mean it takes longer for us to rebuild society in pursuit of numerical goals that ignore the real world we are living in”; if so, why is the Government suppressing public sector pay in the name of “taking financial pressure off the public wage bill”? KIERAN McANULTY to the Minister of Internal Affairs: What progress has she seen on the building of fire stations? NICOLA WILLIS to the Associate Minister of Housing (Homelessness): Does she stand by her statement that some children in emergency housing are living in “inhumane conditions … not suitable for any humans but certainly not suitable for young people”; if so, is she satisfied she is adequately exercising her responsibility for oversight of “progress on the support and prevention pillars for individuals, families and whānau experiencing or at risk of homelessness”?

Dr DUNCAN WEBB to the Minister of Finance: What reactions has he seen to his announcement yesterday of the Government's housing package to back first-home buyers? Hon JUDITH COLLINS to the Prime Minister: Does she stand by all of her Government's statements and actions? ANAHILA KANONGATA'A-SUISUIKI to the Minister of Housing: What recent announcements has she made about supporting first-home buyers? Hon JULIE ANNE GENTER to the Minister of Finance: Does he stand by his statement that “What we are committed to is making sure that houses are more affordable”; if so, does the Government have a position on what ratio of median house price to median household income would mean we have affordable housing in Aotearoa? GLEN BENNETT to the Minister for Social Development and Employment: What reports has she seen about employment in the construction sector? ANDREW BAYLY to the Minister of Finance: Does he stand by all of his statements and actions? BROOKE VAN VELDEN to the Prime Minister: Does she stand by her statement regarding the Government's housing policy, that it will “tip the balance in favour of first-home buyers through our demand measures”? BARBARA EDMONDS to the Minister of Revenue: Why is the Government exempting new builds from changes to the bright-line test and interest deductibility rules? NICOLA WILLIS to the Minister of Housing: Does she stand by her response to concerns that the First Home Grants and Loans caps are too low, “so for the lower quartile, the fourth quartile of that, that is the median point of houses currently that had been sold in March in 2021”; if so, how many homes at this price point will the Housing Acceleration Fund aim to get built in the next 24 months? Dr ANAE NERU LEAVASA to the Minister of Foreign Affairs: What recent announcements has she made about supporting the COVID-19 response across the Pacific? Hon Dr NICK SMITH to the Minister of Research, Science and Innovation: Does she stand by the Government's research and development policies; if so, does she agree with PricewaterhouseCoopers' Research and Development National Director that, with the new funding system, “businesses would have no choice but to delay projects, in the worst-case scenario cancelling them altogether, and actually having to get rid of highly-skilled staff … It's the complete opposite effect of what was intended”? HELEN WHITE to the Minister of Transport: Is the Government helping to keep New Zealand connected with trade partners and maintaining international passenger services; if so, how?

Welcome to the latest episode of Retrosonic Podcast "Music From The Edge of the Universe: The 5 Billion In Diamonds Story". We welcome founder members, the legendary producer and drummer with Garbage Butch Vig, Bristol UK producer Andy Jenks and UK DJ James Grillo to hear the definitive and fascinating story on how this star-studded Transatlantic project came to fruition. The band's second LP "Divine Accidents" (Make Records) was our Album of The Year 2020 and it's another imaginary soundtrack to another imaginary film - a dazzling sonic and cinematic mix of Psych Rock and Folk sounds. It features the same stellar cast of collaborators including singers Ebbot Lundberg of The Soundtrack of Our Lives, David Schelzel of The Ocean Blue, Damian O'Neill of The Undertones, Sandra Dedrick of The Free Design, singer Helen White and musicians including the Bristol Wrecking Crew of Alex Lee, Sean Cook and Damon Reece on guitars, bass and drums. The album also features new sublime contributions from James Bagshaw of British psych rockers Temples and gorgeous vocals from Martin Barnard from Jenk’s '90's combo Alpha. In this thoroughly entertaining journey through 5 Billion In Diamonds musical universe, Butch, Andy and James play and talk us through some of the many and varied influences on the 5BiD sound including John Barry, Ramases, John Carpenter, Jimmie Spheeris, The BBC Radiophonic Workshop, Michel Legrand, Linda Perhacs, Faust, Jeff Bridges and Richard Rodney Bennett. There's also a pick of their own music from both albums including the forthcoming single and a special sneak preview of the as yet unreleased vinyl-only bonus track featuring Jimmy Chamberlin from The Smashing Pumpkins. There's a comprehensive introduction to all of the 5BiD special guest musicians and vocalists and a Butch Vig edited medley of examples of their music. If all that is not enough, James tells us who is next on his special guest wish list, Andy plays a track from his new project Ree-Vo and Butch gives us an update on the new Garbage album. We even find out how TV presenter, naturalist and conservationist Chris Packham is involved with 5 Billion In Diamonds. So, sit back, relax and enjoy this very special episode, packed full of music from the edge of the universe. Please check out the feature at Retro Man Blog at the link below for further information, links, video to their current single and exclusive Paul Slattery photographs. https://retroman65.blogspot.com/2021/02/music-from-edge-of-universe-5-billion.html

Green Party candidate Chloe Swarbrick has won Auckland Central -- beating off Labour's Helen White, and National's Emma Mellow for the role. But the gap is relatively small... with just 492 between the Green and Labour candidates. Ms Swarbrick spoke to Susie Ferguson.

The Auckland Central contest appears to be getting tighter with a new poll showing the gap between the Labour and National candidates has closed to five percentage points.Labour's Helen White is in front on 35 per cent followed by National's Emma Mellow on 30 per cent and the Greens' Chloe Swarbrick on 26 per cent, according to the Q+A Colmar Brunton poll released today.When it comes to party-vote support, Labour is well ahead on 47 per cent, National on 28 per cent and the Greens on 13 per cent.Mellow has closed the gap on White after an earlier poll put her almost 16 percentage points behind.Candidate poll results:Labour - Helen White 35%National - Emma Mellow 30%Green Party - Chlöe Swarbrick 26%ACT - Felix Poole 4%Sustainable New Zealand Party - Vernon Tava 2%TEA Party - Dominic Hoffman Dervan 1%NZ First - Jenny Marcroft 1%Don't know/refused 9%Labour has always been concerned that Swarbrick could split the vote on the left and let National through. Helen White reiterated that concern on Q+A.Prime Minister Jacinda Ardern has campaigned actively with White and ruled out any sort of nod to help the Greens to win it.White said she would love Swarbrick to pull back "but I doubt she is going to"."I've always said it was important we don't split the vote on the left. I don't want to be complacent about this and I don't want people to get confused."Swarbrick responded by saying there was an under-estimation of the independent thinking in Auckland Central. They valued hard work, independent thinks and "boots on the ground" and she had worked hard in the electorate as a list MP in the past three years.Mellow, who is in banking communications, said she was connected to business and that her support was growing every day.White said her 27 years an employment lawyer also clearly meant she connected with small business.In a previous poll, White had 42.3 per cent support, Mellow 26.6 per cent and Swarbrick 24.2 per cent.That poll, one take for The Nation by Reid Research poll, was taken in the first half of September.Labour candidate Helen White. Photo / Brett PhibbsThe seat has been held by National MP Nikki Kaye since 2008 but she announced her retirement from politics shortly after tumultuous events in the National Party including the resignation of leader Todd Muller in July.She had actively promoted the coup against former leader Simon Bridges in May and became Muller's deputy.But she had a high national profile as a young minister in the Key Government and was prominent in socially liberal issues.The Greens usually campaign only for the party vote but have targeted Auckland Central as a seat to win as insurance against its party vote falling below 5 per cent.This is Swarbrick's first term in Parliament. She has been the Greens leading campaigner in the referendum to legalise the recreational use of cannabis.Green candidate Chloe Swarbrick. Photo / Mark MitchellIt came a poor third last election when Green list MP Denise Roche was the candidate.White was second and came within 1581 votes of retaking the seat which has been a traditionally Labour seat - although Sandra Lee held it for the Alliance for a term in 1993.National candidate Emma Mellow. Photo / Brett Phibbs

Auckland Central is a diverse, young and highly educated electorate that's shaping up to be one of the most interesting races this election. Retiring National MP Nikki Kaye says it's a three way race that will be down to the wire - between Labour's Helen White, National's Emma Mellow and the Green's Chloe Swarbrick. What do voters think? Reporter Anneke Smith has been taking the pulse of the electorate.

This episode is taken from #SOchathour live with Helen White 15.07.20, 1pm.

New modelling says Maori who catch COVID are 50% more likely to die from it than non-Maori. Associate Health Minister Peeni Henare - who has special responsibility for Maori health - joins us with his plan to stop that from happening. It ain't easy being Green - especially this week. We ask former Green Party communications and policy director David Cormack what James Shaw’s error of judgement has cost his party.Taiwan’s Covid response is among the best in the world: no lockdown and an epidemiologist for Vice President. We follow Kiwi drag queen Taipei Popcorn in Taipei to see firsthand how they do it. It’s been a National seat for 4 elections, but the resignation of Nikki Kaye means the Auckland Central electorate is up for grabs. Labour’s Helen White gives her five-minute pitch for why voters should give it to her. Plus, road tripping the East Coast with Kiri Allan, analysis from our political panel Marg Joiner and Shane Te Pou, and Vision New Zealand leader Hannah Tamaki on the campaign trail in Rotorua. See omnystudio.com/listener for privacy information.

”Sophistication” comes from the end of the anthology "Winesburg, Ohio," where recurring character George Willard nears the end of his coming-of-age arc. Having lost his mother in an earlier chapter, George has turned 18 and is wandering the streets feeling lost… like he has no place… no identity… but he finds a spiritual mediator in Helen White, who had undergone her own sort of transformation, and in this kinship they discover they can both find the peace that they were looking for...

You can follow Helen on Twitter, and find our more about Talk Money Week and the Insuring Women's Futures campaign.Keep up to date with the podcast and more by signing up to the Feminist Finance newsletter.

Helen White: 6 Time Iron Man competitor, Personal Trainer, Cancer Survivor, and Mother shares with us her courageous battle with cancer and how the power of positive thinking helped her not only overcome these obstacles, but surpass the level of health she thought was possible. We left this interview feeling inspired, and with a different outlook on life. For anyone that is going through a battle with disease, or knows someone who is, we urge you to listen! --- Support this podcast: https://anchor.fm/onehealth/support

In 2000, Helen White, a school guidance counselor, founded a music program in the Alleghany County, N.C, schools. She called it Junior Appalachian Musicians—or JAM. The program offered instruction in the traditional music of the mountains. To say that JAM has been a success would be almost as big an understatement as saying that Bill Monroe had something to do with bluegrass. Now dozens of JAM programs (also known as Traditional Arts Programs for Students or TAPS) play in the mountains of North Carolina, South Carolina, and Virginia. Rising stars from JAM programs are changing the face of traditional music festivals across the region.

In 2000, Helen White, a school guidance counselor, founded a music program in the Alleghany County, N.C, schools. She called it Junior Appalachian Musicians—or JAM. The program offered instruction in the traditional music of the mountains. To say that JAM has been a success would be almost as big an understatement as saying that Bill Monroe had something to do with bluegrass. Now dozens of JAM programs (also known as Traditional Arts Programs for Students or TAPS) play in the mountains of North Carolina, South Carolina, and Virginia. Rising stars from JAM programs are changing the face of traditional music festivals across the region.

Women and Money with Sarah Pennells, talking to Annie O'Leary, fromNetMums, Dawn Quest, from Mealsourkidslove.com and Helen White, from Love Food, Hate Waste, about how you can save money and avoid waste with your weekly food shop. First Broadcast: 05/03/16

It’s a big show this month: fantastic guests, smart conversation and our usual silliness. Baroness Jane Campbell, a crossbench Member of the #HouseofLords and journalist Paul Carter, talk with Steve and Simon about the ‘world's best’ card magician who is also blind, forgetting how to dress properly, and mistaking a very famous person as a waiter. Robin Christopherson tells us about some apps to keep you fit and speak foreign languages, Shannon Murray has spotted therapy ponies in Los Angeles, and Helen White tell us what Barclays are up to for their disabled customers.We discuss some of life's pivotal moments - hanging out with other #disabled people for the first time, discovering the social model (and its limitations), making your maiden speech in the House of Lords or your first stand-up #comedy gig. And how being out of your comfort zone can lead to greater things.

Season 2, Episode 9 Guests: Nii Anang, Wayne Henderson and Helen White, Dean Reed, Sandy & Rob LaPrelle, Chris Owen … The Floyd Radio Show Podcast: May 11, 2013 Read More » The post The Floyd Radio Show Podcast: May 11, 2013 appeared first on The Floyd Country Store.