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In this episode, we delve into the impact of the new groundbreaking research uncovering the RNU4-2 genetic variant linked to neurodevelopmental conditions. The discovery, made possible through whole genome sequencing, highlights a genetic change in the RNU4-2 gene that affects about 1 in 200 undiagnosed children with neurodevelopmental conditions, making it more prevalent than previously thought. This discovery represents one of the most common single-gene genetic causes of such conditions. Our host, Naimah Callachand, Head of Product Engagement and Growth at Genomics England, is joined by Lindsay Pearse who shares her journey through the diagnosis of her son Lars. They are also joined by Sarah Wynn, CEO of Unique, and Emma Baple, Clinical Genetics Doctor and Professor of Genomic Medicine in the University of Exeter and the Medical Director of the Southwest NHS Genomic Laboratory Hub. We also hear from the 2 research groups who independently discovered the findings: Dr Andrew Mumford, Professor of Haematology at the University of Bristol Link to the research paper: https://www.nature.com/articles/s41591-024-03085-5  Assistant Professor Nicky Whiffin, Big Data Institute and Centre for Human Genetics at the University of Oxford Link to the research paper: https://www.nature.com/articles/s41586-024-07773-7 To access resources mentioned in this podcast:  Unique provides support, information and networking to families affected by rare chromosome and gene disorders - for more information and support please visit the website. Connect with other parents of children carrying a variation in RNU4-2 on the Facebook group.   "I think one of the things we really hope will come out of diagnoses like this is that we will then be able to build up more of that picture about how families are affected. So, that we can give families more information about not only how their child is affected but how they might be affected in the future."   You can read the transcript below or download it here: https://www.genomicsengland.co.uk/assets/documents/Podcast-transcripts/How-has-a-groundbreaking-genomic-discovery-impacted-thousands-worldwide.docx  Naimah: Welcome to Behind the Genes. Lindsay: So, this feeling that like we've been on this deserted island for eight years and now all of a sudden, you're sort of looking around through the branches of the trees. 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. Yeah, it's very exciting, it's validating. It gives us a lot of hope and, you know, it has been quite emotional too and also a bit of an identity shift. 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. Naimah: My name is Naimah Callachand and I'm Head of Product Engagement and Growth at Genomics England. On today's episode, I'm joined by Lindsay Pearse whose son Lars recently received a genetic diagnosis, made possible by research using data from the National Genomic Research Library, Sarah Wynn CEO of Unique, and Emma Baple, a clinical genetics doctor. Today we'll be discussing the impact of recent research findings which have found a genetic change in the non-coding RNU4-2 gene, to be linked to neurodevelopmental conditions. If you enjoy today's episode, we'd love your support. Please like, share and rate us on wherever you listen to your podcasts. Naimah: And first of all, I would like everyone to introduce themselves. So, Lindsay, maybe if we could come to you first. Lindsay: Great, thank you. So, thank you for having me. I'm Lindsay Pearse, I live outside of Washington DC and I'm a mum to 3 boys. My oldest son Lars who is 8, he was recently diagnosed with the de novo variant in the RNU4-2 gene. Naimah: Thank you. And Emma? Emma: My name is Emma Baple. I'm a Clinical Genetics Doctor which means I look after children and adults with genetic conditions. I'm also a Professor of Genomic Medicine in the University of Exeter and the Medical Director of the Southwest NHS Genomic Laboratory Hub. Naimah: And Sarah? Sarah: Hi, thank you for having me. I'm Sarah Wynn, I'm the CEO of a patient organisation called Unique, and we provide support and information to all those affected by rare genetic conditions. Naimah: Great, thank you. It's so great to have you all here today. So, first of all Lindsay, I wonder if we could come to you. So, you mentioned in your introduction your son Lars has recently been diagnosed with the de novo variant. I wondered if you could tell us a bit about your story, and what it's been like up until the diagnosis. Lindsay: Sure, yeah. So, Lars is, he's a wonderful 8 year-old boy. With his condition, his main symptoms he experiences global developmental delays, he's non-verbal. He's had hypertonia pretty much since birth and wears AFO's to support his walking. He has a feeding disorder and is fed by a G-Tube. Cortical vision impairments, a history of seizures and slow growth, amongst other things. So, that's just a bit of a picture of what he deals with day to day. But he's my oldest child, so first baby. When I was pregnant, we were given an IUGR diagnosis. He was breech, he had a hernia soon after birth, wouldn't breastfeed. But all of these things aren't terribly uncommon, you know. But once he was about 3 or 4 months old, we noticed that he wasn't really able to push up like he should, and we were put in touch with early intervention services for an assessment. So, we went ahead and did that when he was about 4 or 5 months old. And as parents, we could just kind of tell that something was off from the assessors. And, you know, they were very gentle with us, but we could just get that sense that okay, something is off, and they're worried here. So, that kind of kickstarted me into making appointments left, right and centre with specialists. The first specialist that we saw was a neurologist. And yeah, again, that's another appointment that I'll never forget. She referred us to genetics and to get an MRI and some lab work but at the end of the appointment, she said to us, ‘Just remember to love your child.' And, you know, that was quite shocking to us at the time because it wasn't something that had ever crossed our mind that we wouldn't do or felt like we needed to be told to do this. But on the other hand, it certainly set off a lot of worry and anxiety of okay, well, what exactly are we dealing with here? So, fast forward, we saw genetics and that was about when Lars was about 8 months old. We went through a variety of genetic testing, a chromosomal micro-array, a single gene testing, then the whole exome testing. Everything came back negative, but it was explained to us that what was going on was likely an overarching genetic diagnosis that would explain his like, multi-system symptoms. And so meanwhile as he was getting older his global delays were becoming more pronounced and we were also in and out of the hospital a lot at this time. At first, he was in day care and, you know, any sort of cold virus would always turn into like a pneumonia for him. So, we were just in and out of hospital seeing a myriad of specialists, trying to put together this puzzle of what's going on and it was really hard to accept that nobody could figure it out. That was just, you know, sort of mind-blowing to us I guess. So, we applied for and were accepted into the Undiagnosed Diseases Programme at the National Institute of Health over here. The NIH as it's commonly referred to. So, we first went there when Lars was 2. He was one of their youngest patients at the time. But that was a really great experience for us because we felt like they were looking at him holistically and across a bunch of all of his systems, and not just seeing a specialist for sort of each system. So, we really appreciated that. We also did the whole genome sequencing through this research study. Although that also came back negative and so at that point, we were told to kind of keep following up symptomatically. Keep seeing the specialists and eventually maybe one day we'll find an overarching diagnosis, but that science just hadn't quite caught up to Lars. It was hard for me again to believe that and to sort of wrap my head around that. But certainly, it was an education from all of the doctors and geneticists and everyone we saw at NIH, to realise like how far there still was to go in terms of genetic research. How it wasn't also that uncommon to be undiagnosed in the rare disease community. I would say that being undiagnosed sort of became part of our identity. And it's, you know, it was something that, you know, you had to explain to like insurance companies and to his school, and it became part of our advocacy around him. Because without being able to say oh, it's this specific thing and if it was someone who hadn't met Lars before, trying to explain to them that, you know, yeah, within the range of this community you can be undiagnosed, and they just haven't found it yet, but I promise you there is something going on here. And I'd say the other thing too without a diagnosis you have no prognosis, right? And so, trying to figure out what the future would look like. Also, family planning. We waited 5 and a half years before we had another child and, you know, it was certainly an anxiety ridden decision. Ultimately after seeing as many specialists as we possibly could, we still were left with the same answer of well, we just don't really know if it will happen again. So, that was a big decision to make. But again, it just kind of became part of our identity and something that you did eventually accept. But I would say in my experience I feel like the acceptance part also of Lars' disabilities perhaps took me a little bit longer. Because again, I didn't have a prognosis, so I didn't exactly know what we were dealing with. Only as he has become older and, you know, you're sort of getting a better sense of what his abilities might be than being able to understand, okay, this is what I'm dealing with. I need to accept that and do what I can to care for him and our family in the best way that we can. Naimah: Thanks so much for sharing that, Lindsay. I feel like you've touched on a lot of really, you know, a lot of complications and difficulties for your family. Especially, you know, with regards to keeping hopeful and things about the prognosis as well, I'm sure it was really difficult. You've mentioned that Lars was able to be diagnosed recently due to recent research efforts. So, Sarah, I wonder if you can tell us a bit more about these and what the findings have meant for patients with neurodevelopmental conditions. Sarah: Yes. So, I think we know that there are lots of families that are in Lindsay and Lars' position where they know that there is almost certainly an underlying genetic condition, and it just hasn't been found yet. And so, I think we know that lots of researchers are working really hard to try and find those causes. I think over time we know that as time goes on and research goes on, we'll find more of these new genetic causes for neurodevelopmental conditions. I think particularly as we start to look at regions of the genome that we haven't looked at so much so far. But I think one of the things that's really extraordinary about this one is that actually it turns out to be much more common than we might have expected, for one of these new conditions that we haven't found before. But I think it's about one in 200 of those undiagnosed children with neurodevelopmental conditions, have this diagnosis so that's not a small number. That's not a rare finding at all actually, that's much more common than we could ever have anticipated. But I think one of the things that we do know is that as we look further and deeper into that genomic sequence, so, we've started off looking at the bits of the sequence that are genes that code for proteins. This changes in a gene that actually doesn't code for protein, so it's less obvious that it would be important but clearly it is important in development because we know when it has a spelling mistake in it, it causes this neurodevelopmental condition. But there will be as researchers look more and more at these kinds of genes, and also the other part of the genome that is not genes at all, we'll find out more and more the underlying genetic causes of these neurodevelopmental conditions. I think it's also really important to stress why this is so important to find these genetic changes and it's because families really need a diagnosis. Lindsay talked quite eloquently and a lot about that knowing something was off and really wanting to know the reason why. Getting these diagnoses might change care management or treatment, but actually really importantly it just gives an answer to families who have often been looking for an answer for a really long time. Naimah: I just wanted to go back to the point that Sarah made that actually this genetic change is relatively common. Emma, I wondered if you could tell us a bit more about maybe why it took us so long to discover it? Emma: That's an interesting question actually. I suppose the sort of slightly simplified answer to that question is we haven't been able to sequence the whole of a person's genetic information for that long. And so, children like Lars would have had, as Lindsay described lots and lots of genetic tests up until they had a whole genome sequencing which is what Sarah was talking about. The types of tests that we had up until the whole genome sequencing wouldn't have allowed us to look at that bit of the genetic code where this RNU4-2 gene can be found. So, we can only really find that using whole genome sequencing. So, before that existed, we wouldn't have been able to find this cause of developmental condition. Naimah: Okay, thanks Emma. Naimah: Now we're going to hear from one of the two research groups who are responsible for these research findings. First of all, let's hear from Nicky Whiffin. (Clip - Nicky Whiffin) Naimah: How were the findings possible using the Genomics England dataset? Nicky: So, most previous studies have only looked at genetic variants that, in genes that make proteins, but only a subset of our genes actually do makes proteins. The Genomics England dataset we have sequencing information on the entire genome, not just on these protein coding genes and that means we can also look at variants in other genes. So, those that make molecules other than proteins. And RNU4-2 for example, makes an RNA molecule. Naimah: These findings translated to direct patient benefit for patients like Lars who were able to receive support from Unique. How does this demonstrate the value of the dataset? Nicky: Yes. So, it was incredible that we could find so many patients with RNU4-2 variants so quickly. This was enabled by access to Genomics England data but also to other large sequencing datasets around the world. So, we worked with people in the US, in Australia and also in mainland Europe. These large datasets enabled us to spot consistent patterns in the data and by looking across multiple datasets we can also make sure that our findings are robust. When we realised how significant this was and how many families would be impacted, we very quickly contacted Sarah at Unique to see if we could direct patients to them for support. (End of clip) Emma: There's one thing I wanted to raise. It's important to recognise the way that was discovered was through the National Genomic Research Library that Genomics England hosts. To highlight the value of that, and the value of having this centralised resource where families have been kind enough really to allow their data to be shared with some limited clinical information that allowed these researchers to be able to pull this out. And I think it highlights the power of the National Health Service in that we were able to create such a resource. It's really quite astounding that we've found such a common cause of a rare genetic condition, and it wouldn't have happened in the same timescale or in this way without that resource. And then to just say that as Sarah talked about the fact that we've been able to get that information out there, also the researchers were able to get out there and contact the NIH and all of these other programmes worldwide. In Australia, America, everywhere in the world and quickly identify new patients who had this condition and get those diagnoses out really rapidly to people. But all that came from that power of sharing data and being able to have that all in one place and making it accessible to very clever people who could do this work and find these answers. It's so important for families like Lindsay's, and all the families in England and around the world that have got these answers. So, I guess it's a big plug for the value of data sharing and having a secure place where people feel that it's trusted and safe, that enables these diagnoses to be made. Lindsay: If I could just echo that, we're so grateful that that exists in the UK. Just acknowledging like the privilege here that we have had to be able to, I mean for our family in the US, that we've been able to, you know, get ourselves into the NIH study and into the study at Children's National. That takes a lot of work. I feel like not everybody has that opportunity to be able to spend the time to do these applications and to go to all the appointments and get the testing done and have the insurance to cover it. So, very grateful that the system exists in a way in the UK that made this sort of research possible. I just hope that that can be replicated in other places, and also to what Emma was saying earlier, come up with a lower cost test as well for this to further the growth of the community and of course then the corresponding research. Sarah: I think firstly we have to sort of thank all of those families that took part and do share their data, because I think it's not always clear why you might want to do that as a family. I think this is really a powerful example of the benefit of that. I also think the data sharing goes one stage further. So, it's partly about getting the diagnosis, but the data sharing going forward about how this condition impacts families, both clinically and sort of day to day lived experience, is how we'll be able to learn more about these conditions. And so, when families get this diagnosis next week or next year, not only will they get a diagnosis, but they'll get a really good idea about what the condition is and how it might impact their child. Naimah: And Lindsay, coming back to you. So, we've talked about, you know, what it meant for your family before the diagnosis, but what has it meant to have a diagnosis and how did you feel? And what happened whenever you received the diagnosis? Lindsay: Sure. Lars was again part of the NIH Undiagnosed Diseases Research study. So, once you attend this programme and if you are not diagnosed like at the end of your stay, they keep your details on file and you're part of this database at the NIH Undiagnosed Diseases Programme. So, if you're undiagnosed after your sort of week-long work up, your samples stay within the research programme. We were also part of a research programme at Children's National Medical Centre, the Rare Disease Institute. So, our samples were sort of on file there in their database as well. And so, at the end of March I was really quite shocked to receive a call from our long time and trusted geneticist at Children's National that they had found a diagnosis. It was quite emotional. I really kind of didn't believe it. I just kept asking, you know, ‘Are you sure? Is this it?' you know, ‘How confident are we?' Because I think in my head, I sort of always thought that we would eventually find a diagnosis, but I thought that Lars would be, you know, a 30- or 40-year-old adult. I thought it would be decades from now. Like I felt like for whatever reason we had to wait decades for the science to sort of catch up to him. So, we were very, very grateful. It felt very validating, I guess. I had always kind of had this intuition feeling that we were sort of missing something and it's more that the science just hadn't quite caught up yet. But, you know, it was validating to know that okay, Lars is not the only person in the entire world with this, it is something that is relatively common in fact within the rare disease community. That is also very exciting to me personally because I'm hopeful that that will lead more researchers to be interesting in this, given how, quote on quote, common it is. I've sort of been describing it as like a mass diagnosis event but also more so 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. It's like, wait a minute, there are other people on this island ad in this case, there's actually a lot more people on this island. Yeah, it's very exciting, it's validating. It gives us a lot of hope. And, you know, it has been quite emotional too and also a bit of an identity shift. Because I spoke earlier about how like being undiagnosed had become quite a big part of our identity. So, now that's kind of shifting a little bit that we have this new diagnosis and are part of a new community. But yeah, we're just very grateful that the research had continued. And, you know, I think sometimes you sort of have this feeling of okay, our files are up on a shelf somewhere, you know, collecting dust and are people really looking at them? And actually, it turns out that the research was ongoing and yeah, we're just very grateful for that. Naimah: Thanks so much for sharing, Lindsay. It sounds like it's been a real rollercoaster of emotions for your family and I'm glad to hear that, you know, you've got some hope now that you've got a diagnosis as well. So, moving onto the next question. Emma, I wanted to ask you then, how will these findings improve clinical diagnostic services for those for neurodevelopmental conditions? Emma: So, you asked me earlier about why it had taken so long to find this particular cause of neurodevelopmental condition, and I gave you a relatively simple answer. The reality is one of the other reasons is that almost eight out of ten children and adults who have RNU4-2 related neurodevelopmental condition have exactly the same single letter spelling change in that gene. So, actually that in itself means that when researchers are looking at that information, they might think that it's actually a mistake. Because we know that when we sequence genetic information, we can see mistakes in that sequencing information that are just because the machine has, and the way that we process that data, it's not perfect. So, sometimes we find these little mistakes and they're not actually the cause of a person's problems, they're just what we call an artefact or an issue with the way that that happens. So, that is part of the reason for why it was tricky for us to know whether this was, or rather the researchers to know whether this was or was not the cause of this particular condition. But that in itself is quite helpful when we think about how we might identify more people who have this going forwards. Because unlike in Lars' case where we didn't know what the cause was and so we were still searching, and we didn't know where to look in the billions of letters that make up the genetic code to find that answer, we now know that this is really very common. It's unbelievably common. I think we didn't think we would be finding a cause of a rare genetic condition that was this commonly occurring at this stage. But the fact that it's just a single, it's commonly this one single change in the gene means that we can set up pretty cheap diagnostic testing. Which means that if you were somewhere where you wouldn't necessarily have access to whole genome sequencing, or a more comprehensive testing in that way, we could still be able to pick up this condition. And it's common enough that even if you didn't necessarily recognise that a person had it, you could still have this as part of your diagnostic tool kit for patients who have a neurodevelopmental condition. It's common enough that just doing a very simple test that could be done in any diagnostic lab anywhere in the world, you would be able to identify the majority of people who have this. Naimah: Now let's hear from the other research group who are responsible for these findings. Here is Dr Andrew Mumford. (Clip - Dr Andrew Mumford) Naimah: Why are these research findings significant? Andrew: It offers genetic diagnosis not just for a handful of families but potentially for many hundreds of families, who we all know have been searching often for many, many years for a genetic diagnosis. But actually, there are other gains from understanding how this gene causes neurodevelopmental disorder. We know that there's GRNU4-2 in codes, not a protein actually, but a small nuclear RNA which is unusual for rare, inherited disorders. It's a component of a very complicated molecule called the spliceosome which in turn regulates how thousands of other genes are regulated, how they're made into proteins. So, fundamentally this discovery tells us a lot about the biology of how the spliceosome works. We already know that some other components of the spliceosome can go wrong, and result in diseases like neurodevelopmental disorders. This gives us an extra insight and actually opens the door to, I hope, a whole load of more discoveries of genetic diagnosis possible from other components of this complicated molecule. Naimah: Your research group used a mathematical modelling approach. Can you tell me a bit about this, and what this means for other rare conditions, Andrew? Andrew: So, identifying relationships between changes in individual genes and different kinds of rare, inherited disease is notoriously difficult because of the volume of data that's involved and the need to be absolutely certain that observed genetic changes are actually the cause of different rare, inherited disease. So, applying statistics to that kind of problem isn't new. But what my collaboration group have achieved here, is to develop, actually developed some years ago a completely new approach to applying statistics to genetic data. We call that BeviMed and we've been working for many years on the genes in code that make individual proteins. Most rare disorders are caused by genetic changes in genes that make proteins. What this discovery comes from is actually we've applied the BeviMed statistical technique to genes that don't make proteins, they're non-coding genes. For example, genes that make small nuclear RNA, it's just like RNU4-2. What's unusual about the BeviMed approach is that it's very sensitive to detecting links between genetic changes and rare diseases, and it can detect statistical associations really driven by very, very small numbers of families. So, we apply it to datasets like the 100,00 Genomes dataset and identify associations using statistics that have got a very high probability of association. Other members of the team then seek to corroborate that finding by looking at if we can see the association in other datasets, and we certainly achieve that with RNU4-2. But also, assessing biological plausibility by investigating what we understand already about in this case, a small nuclear RNA, and how it can possibly result in a disease. And we normally try and employ other independent evidence such as experimental investigation. Or going back to our families and asking for additional data to help really test this sort of theory that changes in this particular gene have resulted in a problem with neurodevelopment. (End of clip) Naimah: Emma, are there any other ways that we can identify these conditions based on their clinical presentation? Emma: So, Lindsay and I were talking with you just yesterday, wasn't it? And I asked Lindsay about what sorts of things Lars had in common with other children and adults who have been diagnosed with this condition? I actually think Lindsay probably gives a better summary than I would, so I might ask you to maybe repeat what you said to me yesterday. But the bit of it that really stood out to me was when you said to us that a lot of parents have said, ‘I'm not sure how we weren't all put together in the first place because you notice so many things that were in common.' So, maybe if you can give that summary and then I can translate that back into medical terms, if that's okay Lindsay. Lindsay: Sure, of course. Yeah, it been again, kind of mind blowing, some of the similarities. Especially as we've exchanged pictures and such, and baby pictures especially where some of the children like look like siblings. So, definitely some similarities in facial features, you know, everyone seems to experience some of the slow growth, so a short stature or quite skinny. There's feeding issues also that seem to be quite common. Also, you know, things like the global developmental delays, that's certainly across the board and histories of seizures, that's also quite common. Some people have experienced also some, like, bone density issues, that's not something that we've experienced so far, but that also seems to be quite common. But then also, behaviourally, there's a lot of similarities which has been, I think, quite exciting to a lot of us because you've always thought okay, so this is just my child. And of course, some of that is true but it's also interesting to find out some of these other things that are, you know, are quite similar. So, a lot of people have mentioned their child having, like, an interesting sense of humour. Kind of like a very slapstick sense of humour which is quite interesting. Or everyone seems to love water, everybody loves swimming pools and bathtime, and all of that. Lars loves a windy day. Something about the wind, he just loves it and plane noises and things like that have also come up with other people. So, yeah, it's been really interesting and cool to see. Emma: So, I guess Lindsay's sort of very beautifully summed up what is written in the research publication. So, there's only two research publications so far on this condition, it's all really new. And I am definitely not claim to be a clinical expert on this condition, and I don't think there are any yet. It will take people time to see lots of children and adults who have this particular condition. But ultimately what Lindsay summarised was the common clinical features that have been described by parents. In my job as a clinical genetics doctor, part of what we look at is a person's appearance. So, Lindsay described the photographs of children particularly when they were little, looked very similar. In the photographs that I've seen, I would agree with that. And so obviously those children look like their mum and dad, but they have other features that are in common. They have a characteristic appearance and that helps doctors like me to have an idea as to whether a child or an adult might have a particular condition. Then put together with the sorts of information that Lindsay gave us around the low tone, so being a little bit floppier particularly when they're little. The slow growth and growth problems, problems with eating, also with seizures. Those are all common things that were pulled out of both of the two research publications on this condition and putting that all together into one picture helps doctors to have an idea whether somebody may have a particular condition. That would help us in this case to potentially request that simple test I was talking about, if maybe we were practicing in a part of the world where we wouldn't have the resources that we thankfully do have in the United Kingdom, and in the USA. Naimah: So, Sarah, just coming to you next. How does this research spread awareness and help other patients with these conditions? Sarah: So, I think one of the things that's been really great about research now is that we are able to, you know, social media and things like that mean that we can spread this information really quickly across the world basically. I think what that does is that as well as helping bring people together that they've got this diagnosis, what it does is I think it provides hope for all of those people that Lindsay was talking about at the beginning who don't have a diagnosis. So, that piece around people are still looking, the researchers are working hard and that even if you don't have a diagnosis today you might get one in the future. Lindsay talked about your sample being dusty and not being looked at. I think it gives lots of families, not just those that get this diagnosis but all of those that haven't got a diagnosis, hope, that hopefully in the future they will get a diagnosis. I think one of the things we really hope will come out of diagnoses like this is that we will then be able to build up more of that picture about how families are affected. So, that we can give families more information about not only how their child is affected but how they might be affected in the future. That prognosis information that Linsday said is really missing when you don't have a diagnosis. And I think the other thing that hopefully is the next stage in this journey with this discovery is that those two science publications that Emma talked about, what we will want to do here at Unique working with the researchers and those families that have got a diagnosis, is to produce a patient family friendly information leaflet about this condition. One of the things we know is really important about those patient leaflets is including the photos. Because as both Emma and Lindsay have said that idea that they have facial features in common. And so, if you look at a leaflet and you can recognise your child in it, and you can see others that look like it, that can be a really sort of quite heartwarming experience in what often is a lonely experience with a rare condition. Naimah: And I think kind of on that point about it being a lonely experience, I wondered Lindsay if you could talk a bit more if this research has allowed you to connect with other parents and families who have received a diagnosis, and what impact that's had on your family? Lindsay: Yeah. I mean, and I think everything that Sarah has said was spot on. It's wonderful to have resources like Unique to connect families and have those diagnoses on the platform, so other clinicians can look for it and sort of grow this group. I think that has definitely been the highlight of getting this diagnosis at this stage, right. Because there's not much more you can do with it, with someone so brand new so being able to connect with the other families has been wonderful. One amazing mum who with this diagnosis set up a Facebook group, RNU4-2 Family Connect. And, you know, it's just been amazing to see people from all over the world joining this as they receive this diagnosis, you know, sharing their stories. We've spent countless hours on the weekends over the past couple of months on Zoom calls with total strangers, but just you find that you can just talk for hours and hours because you have so much in common. It's great to see what has worked well for other families and, you know, what has not worked. Sharing resources, just kind of all learning together. Also seeing the spectrum of this diagnosis, I think most genetic disorders have a spectrum and this seems to be the same here. So, that's been very interesting. And of course, our son is 8, Lars is 8. There's now a 33-year-old and a 29-year-old in the Facebook group. Speaking for me personally it's just amazing to see them and like it's very cool to see where they're at. That sort of helps you answer some of those questions about that before were quite unknown when you were thinking about the future. Obviously, everybody's development whether you have a genetic disorder or not, it is going to be what it's going to be, and everybody is going to do their own thing. But being able to see what a path might look like is just so helpful. And, you know, we all want community and connection, and so this has been really, really great to have that now. Sarah: I don't think there's much more that I can add because Lindsay articulated so well. But it's really heartwarming for us to hear the benefits of those connections because that's really why Unique and other support groups exist. Is to provide, partly to provide information, but I think predominantly to put families in touch with other families so that they can find a new home and connect and share experiences. And, you know, stop feeling as alone as they might have done before. Naimah: Okay, we'll wrap up there. Thank you to our guests, Lindsay Pearce, Sarah Wynn and Emma Baple for joining me today as we discussed the research findings which found a genetic change in the RNU4-2 gene which has been linked to neurodevelopmental conditions. If you'd like to hear more like this, please subscribe to Behind the Genes on your favourite podcast app. Thank you for listening. I've been your host and producer, Naimah Callachand, and this podcast was edited by Bill Griffin of Ventoux Digital.

This interview was recorded at GOTO Amsterdam for GOTO Unscripted.http://gotopia.techRead the full transcription of this interview hereMartin Kleppmann - Researcher at the Technical University of Munich & Author of "Designing Data-Intensive Applications"Jesse Anderson - Managing Director of Big Data Institute, Host of The Data Dream Team PodcastRESOURCESJesse Anderson: https://youtu.be/cWSCI1LpoGYMartin Kleppmann: https://youtu.be/esMjP-7jlREPrag. Dave Thomas: https://youtu.be/ug8XX2MpzEwhttps://automerge.orgMartinhttps://martin.kleppmann.comhttps://twitter.com/martinklhttps://nondeterministic.computer/@martinhttps://linkedin.com/in/martinkleppmannJessehttps://twitter.com/jessetandersonhttps://www.jesse-anderson.comhttps://sodapodcast.libsyn.com/sitehttps://linkedin.com/in/jessetandersonhttps://www.jesse-anderson.com/category/blogDESCRIPTIONJesse Anderson, director at Big Data Institute, and Martin Kleppmann, author of "Designing Data-Intensive Applications" explore together the evolving data landscape. They start with the origins of Martin's book, emphasizing the crucial art of asking the right questions. Martin unveils industry shifts since 2017, spotlighting the transformative rise of cloud services.The conversation then takes a twist as Martin delves into academia, sharing insights on local-first collaboration software and the fascinating world of Automerge. Aspiring software engineers are treated with some advice on how to navigate the delicate balance between simplicity and adaptability.The interview concludes with a glimpse into diverse career paths in the dynamic realm of data engineering, making it a must-watch for professionals at every stage of their journey.RECOMMENDED BOOKSMartin Kleppmann • Designing Data-Intensive ApplicationsMartin Kleppmann • Secret Colors: A Gentle Introduction to CryptographyJesse Anderson • Data TeamsJesse Anderson • Data Engineering TeamsJesse Anderson • The Ultimate Guide to Switching Careers to Big DataViktor Gamov, Dylan Scott & Dave Klein • Kafka in ActionFabian Hueske & Vasiliki Kalavri • Stream Processing with Apache FlinkTwitterInstagramLinkedInFacebookLooking for a unique learning experience?Attend the next GOTO conference near you! Get your ticket: gotopia.techSUBSCRIBE TO OUR YOUTUBE CHANNEL - new videos posted daily!

In this episode of the “Engineering Room” Dave Farley talks to Jesse Anderson about Big Data and Data Engineering exploring what it takes to implement effective big data solutions and explore what data engineering is and why it matters. Jesse Anderson is a Data Engineer, author and trainer who runs a company called the Big Data Institute where he helps companies all over the world with their Big Data problems. His company also runs training courses to help people to learn, and extend their skills in Data engineering and data science, targeted at helping software engineers to understand and use big data more effectively.xxJesse Anderson's Blog Site: https://www.jesse-anderson.com Jesse Anderson's Data Engineering Courses: https://www.jesse-anderson.com/courses/ The Data Dream Team Podcast: https://dreamteam.soda.io Hidden Tech Debt in Machine Learning Systems: https://proceedings.neurips.cc/paper/...If you want to learn Continuous Delivery and DevOps skills, check out Dave Farley's courses ➡️ https://bit.ly/DFTraining

In this podcast episode, host Ole Olesen-Bagneux welcomes Jesse Anderson, an esteemed figure in big data, Managing Director at Big Data Institute, and author of "Data Teams: A Unified Management Model for Successful Data-Focused Teams". Jesse shares insights from his experiences at Cloudera and as a software engineer, emphasizing a holistic approach to big data that integrates both technical skills and organizational strategy.Jesse highlights the importance of structuring data teams effectively, advocating for a triad of specialized groups: data science, data engineering, and operations. He critically assesses the common pitfalls companies face in big data, such as overestimating their capabilities and neglecting the organizational aspects essential for success.The conversation pivots to the evolution of big data, where Jesse addresses its maturity, challenges, and the misconceptions fueled by industry hype. He offers a pragmatic view on the value creation of data teams, urging a focus on tangible business outcomes and a strategic approach to technology adoption.

The International Risk Podcast is a weekly podcast for senior executives, board members, and risk advisors. In these podcasts, we speak with risk management specialists from around the world. Our host is Dominic Bowen, originally from Australia, is one of Europe's leading international risk specialists. Having spent the last 20 years successfully establishing large and complex operations in the world's highest-risk areas and conflict zones, Dominic now joins you to speak with exciting guests from around the world to discuss risk.The International Risk Podcast – Reducing risk by increasing knowledgeFollow us on Facebook, Twitter, Instagram, and LinkedIn for all our great updates.Today, we are excited to be joined by Brieuc Lehmann, a lectureer at University College London. Before taking up his current post at UCL, Brieuc was a postdoctoral research associate in statistical machine learning at the Big Data Institute at the Department of Statistics at the University of Oxford. Brieuc's Primary research area is health data science and, more specifically, he has an interest in learning about statistical methods of health equality. He has previously spoken about AI in healthcare and his concerns regarding the potential risks of AI to exacerbate inequalities in healthcare.

In episode 69, I'm joined by Jesse Anderson from Lisbon. Jesse is the founder of the Managing Director of the Big Data Institute and we chat about how Data Engineering especially has developed over the years. Plus, Jesse has some challenging things to say to the training industry. Jesse explains why leaders need to be clear on the depth of data engineering skills they require & the vital role of specialism in this field. He also shares the results from his latest annual survey of data teams which you can find here: https://www.jesse-anderson.com/2023/03/data-teams-survey-2023-results/ A self-taught data leader, Jesse's practical perspective & technical depth is well worth hearing in a data science world that can be in danger of valuing qualifications above delivered value.

https://www.patreon.com/datameshradio (Data Mesh Radio Patreon) - get access to interviews well before they are released Episode list and links to all available episode transcripts (most interviews from #32 on) https://docs.google.com/spreadsheets/d/1ZmCIinVgIm0xjIVFpL9jMtCiOlBQ7LbvLmtmb0FKcQc/edit?usp=sharing (here) Provided as a free resource by DataStax https://www.datastax.com/products/datastax-astra?utm_source=DataMeshRadio (AstraDB) Transcript for this episode (https://docs.google.com/document/d/1J5LuzBWwHZIp1cXPKctyb88iXCQDPAhVDlwiMGJ3wfM/edit?usp=sharing (link)) provided by Starburst. See their Data Mesh Summit recordings https://www.starburst.io/learn/events-webinars/datanova-on-demand/?datameshradio (here) and their great data mesh resource center https://www.starburst.io/info/distributed-data-mesh-resource-center/?datameshradio (here) In this episode, Scott interviewed Jesse Anderson, Managing Director at consulting company Big Data Institute, host of the Data Dream Team podcast, and author of 3 books, most recently Data Teams. To start, a few takeaways from Jesse's perspective on the choosing technology side: You should make sure you have the right team in place to make good technology decisions - the team needs to be in place first Before selecting any technology, it's crucial to understand what you are trying to accomplish. And to understand that the technology will provide help in addressing the challenge but won't solve anything itself Focus on: is this the right tool or solution for us now and in the future? What is the roadmap and vibrancy of the solution? "Technology must earn its keep", meaning you should understand the total cost of ownership and what is your expected return on investment Data tooling cycles are probably going to be 10 years at the most - prepare for obsolescence so you aren't overly reliant on any one technology And some takeaways from Jesse's point of view on decentralizing data teams: Currently, software engineers aren't ready to be data product developers so you'd need embedded data engineers to handle creating and maintaining data products in data mesh But many data engineers are not willing to be embedded into domains Managing the dotted line versus solid line of reporting between a functional team and the domain is very difficult There are a number of cracks where crucial data can fall into and fail to find a good owner in a decentralized structure, especially aggregate data products Jesse started the conversation on how important people are to getting things right with data, especially making technology decisions. The chicken and egg question is do you need to have the right people in place first or do you want to make technology decisions that will attract people. In Jesse's view, you need the right people in place first as they will be the ones to make the right decisions on technology selection. The most important question for Jesse when selecting technology is what are you trying to accomplish with technology. If you don't focus on the target outcome, that is not going to work out well. And you should know, in general, what most of your use cases will be for the technology - use that to assess what is the right technology to choose. Also, for Jesse, "technology must earn its keep". Just because you made a decision on using that technology at one point, it must continue to be of more value than its cost. And you want to strongly factor in your long-term total costs, as best as you can estimate then, when looking at adding a technology. This is important for build versus buy, can you continue to keep something running, is the long-term roadmap a match to your goals and vision, etc. Jesse also pointed to how different data is to the operational side relative to technology cycles. Considering Hadoop, where Jesse focused in his time at Cloudera, 10 years - or even less - is realistic for how long data technologies might be around. Thinking in those

Watch as Jesse Anderson, CEO of Big Data Institute, shares the Top 3 important things to consider in building a "Data Team". More info on: Website: https://www.bigdatainstitute.io/ Twitter: https://twitter.com/RAI_News LinkedIn: https://www.linkedin.com/company/rj-reynolds/ Youtube: https://www.youtube.com/channel/UCZ90-g8v7voyY2W9SMkpX2Q Instagram: https://www.instagram.com/reynoldsamericaninc/ While you're at it, follow us on all social media platforms: Facebook: https://www.facebook.com/AiNerdOfficial Instagram: https://www.instagram.com/ainerdofficial/ Twitter: https://twitter.com/AINerdOfficial LinkedIn: https://www.linkedin.com/company/ainerd Be my next guest! Let's find time at https://calendly.com/instarel/learn-more Don't forget to subscribe to never miss out on our next episode.

In this week's episode Patrick speaks to Director of the Big Data Institute at University of Oxford, Professor Cecilia Lindgren, about her biggest eureka moment, the power of collaboration and consortiums across academia and industry to grow genetic sample sizes and accelerate research, and the importance of best practice standards to enable genetic research to scale successfully.

In this week's episode Patrick speaks to Director of the Big Data Institute at University of Oxford, Professor Cecilia Lindgren, about her biggest eureka moment, the power of collaboration and consortiums across academia and industry to grow genetic sample sizes and accelerate research, and the importance of best practice standards to enable genetic research to scale successfully.

This week our special correspondent and editor Jenn Webb organized a mini-panel composed of myself and Jesse Anderson, Managing Director at the Big Data Institute. Jesse is the author of a recent book entitled “Data Teams: A Unified Management Model for Successful Data-Focused Teams”. This conversation was focused on key areas in data engineering.Subscribe: Apple • Android • Spotify • Stitcher • Google • RSS.Detailed show notes can be found on The Data Exchange web site.Subscribe to The Gradient Flow Newsletter.

(Prima parte) Secondo incontro di un ciclo di sei webinar per conoscere i dieci membri del Foro regionale per la Ricerca e l'Innovazione. Francesco Lescai (Professore associato, Responsabile del Laboratorio di Genomica Computazionale presso il Dipartimento di Biologia e Biotecnologie "L. Spallanzani" dell'Università di Pavia) e Federica Lucivero (Senior Researcher presso l'Ethox Centre del Big Data Institute dell'Università di Oxford, UK) introdotti da Angela Simone (Fondazione Giannino Bassetti). L'incontro ha anche permesso di raccontare alcune delle attività che il Foro ha svolto durante questi anni di supporto a Regione Lombardia sulla responsible governance regionale su temi di ricerca e innovazione, quali genomica applicata allo screening neonatale, mobilità del futuro, policy su sostenibilità, bioeconomy e circular economy e advisory sul ruolo di ricerca e innovazione nel post-COVID e nel design del Piano Strategico Triennale su R&I. Sintesi, video e altre immagini sono disponibili nel nostro sito: https://www.fondazionebassetti.org/it/focus/2021/07/incontrando_il_foro_regionale_.html #bioetica #cura #digitalizzazione #economiacircolare #ForoRegionale #governance #medicina #RegioneLombardia #ricerca #ricercascientifica #RRI #sostenibilità ------------------

Secondo incontro di un ciclo di sei webinar per conoscere i dieci membri del Foro regionale per la Ricerca e l'Innovazione. Francesco Lescai (Professore associato, Responsabile del Laboratorio di Genomica Computazionale presso il Dipartimento di Biologia e Biotecnologie "L. Spallanzani" dell'Università di Pavia) e Federica Lucivero (Senior Researcher presso l'Ethox Centre del Big Data Institute dell'Università di Oxford, UK) introdotti da Angela Simone (Fondazione Giannino Bassetti). L'incontro ha anche permesso di raccontare alcune delle attività che il Foro ha svolto durante questi anni di supporto a Regione Lombardia sulla responsible governance regionale su temi di ricerca e innovazione, quali genomica applicata allo screening neonatale, mobilità del futuro, policy su sostenibilità, bioeconomy e circular economy e advisory sul ruolo di ricerca e innovazione nel post-COVID e nel design del Piano Strategico Triennale su R&I. Sintesi, video e altre immagini sono disponibili nel nostro sito: https://www.fondazionebassetti.org/it/focus/2021/07/incontrando_il_foro_regionale_.html #bioetica #cura #digitalizzazione #economiacircolare #ForoRegionale #governance #medicina #RegioneLombardia #ricerca #ricercascientifica #RRI #sostenibilità ------------------

(Seconda parte) Secondo incontro di un ciclo di sei webinar per conoscere i dieci membri del Foro regionale per la Ricerca e l'Innovazione. Francesco Lescai (Professore associato, Responsabile del Laboratorio di Genomica Computazionale presso il Dipartimento di Biologia e Biotecnologie "L. Spallanzani" dell'Università di Pavia) e Federica Lucivero (Senior Researcher presso l'Ethox Centre del Big Data Institute dell'Università di Oxford, UK) introdotti da Angela Simone (Fondazione Giannino Bassetti). L'incontro ha anche permesso di raccontare alcune delle attività che il Foro ha svolto durante questi anni di supporto a Regione Lombardia sulla responsible governance regionale su temi di ricerca e innovazione, quali genomica applicata allo screening neonatale, mobilità del futuro, policy su sostenibilità, bioeconomy e circular economy e advisory sul ruolo di ricerca e innovazione nel post-COVID e nel design del Piano Strategico Triennale su R&I. Sintesi, video e altre immagini sono disponibili nel nostro sito: https://www.fondazionebassetti.org/it/focus/2021/07/incontrando_il_foro_regionale_.html #bioetica #cura #digitalizzazione #economiacircolare #ForoRegionale #governance #medicina #RegioneLombardia #ricerca #ricercascientifica #RRI #sostenibilità ------------------

In this livestream, I am joined by Jesse Anderson, author of the book ’Data Teams: A Unified Management Model for Successful Data-Focused Teams, Data Engineer, Creative Engineer and Managing Director of Big Data Institute.

Federica Lucivero, senior researcher al Centro Ethox al Big Data Institute dell'Università di Oxford e coordinatrice del network Digital Health al King's College di Londra. Protagoniste del seminario tenutosi presso la Fondazione sono state le tecnologie informatiche emergenti applicate al contesto sanitario (app per la salute, sensori indossabili, portali online) e le questioni di responsabilità e di governance che nascono dall'ambiguità normativa dei device che si collocano al confine tra la sfera sanitaria e quella del lifestyle. Siamo di fronte a strumenti tecno-scientifici che appartengono al dominio della medicina, e come tali sono configurabili e regolabili con norme, prassi e certificazioni tipiche di questo ambito? O siamo di fronte a oggetti che si insinuano nelle intercapedini di diversi mondi, che spesso sfruttano questa zona grigia? Video, slide, immagini, sintesi dell'incontro nel nostro sito: https://www.fondazionebassetti.org/it/focus/2018/01/tra_salute_e_benessere_tecnolo.html Un incontro del 13 settembre 2017 che, alla luce della pandemia, offre numerosi spunti di riflessione.

Terza parte: Federica Lucivero. Dibattito Federica Lucivero, senior researcher al Centro Ethox al Big Data Institute dell'Università di Oxford e coordinatrice del network Digital Health al King's College di Londra. Protagoniste del seminario tenutosi presso la Fondazione sono state le tecnologie informatiche emergenti applicate al contesto sanitario (app per la salute, sensori indossabili, portali online) e le questioni di responsabilità e di governance che nascono dall'ambiguità normativa dei device che si collocano al confine tra la sfera sanitaria e quella del lifestyle. Siamo di fronte a strumenti tecno-scientifici che appartengono al dominio della medicina, e come tali sono configurabili e regolabili con norme, prassi e certificazioni tipiche di questo ambito? O siamo di fronte a oggetti che si insinuano nelle intercapedini di diversi mondi, che spesso sfruttano questa zona grigia? Video, slide, immagini, sintesi dell'incontro nel nostro sito: https://www.fondazionebassetti.org/it/focus/2018/01/tra_salute_e_benessere_tecnolo.html Un incontro del 13 settembre 2017 che, alla luce della pandemia, offre numerosi spunti di riflessione.

Seconda parte. Federica Lucivero, senior researcher al Centro Ethox al Big Data Institute dell'Università di Oxford e coordinatrice del network Digital Health al King's College di Londra. Protagoniste del seminario tenutosi presso la Fondazione sono state le tecnologie informatiche emergenti applicate al contesto sanitario (app per la salute, sensori indossabili, portali online) e le questioni di responsabilità e di governance che nascono dall'ambiguità normativa dei device che si collocano al confine tra la sfera sanitaria e quella del lifestyle. Siamo di fronte a strumenti tecno-scientifici che appartengono al dominio della medicina, e come tali sono configurabili e regolabili con norme, prassi e certificazioni tipiche di questo ambito? O siamo di fronte a oggetti che si insinuano nelle intercapedini di diversi mondi, che spesso sfruttano questa zona grigia? Video, slide, immagini, sintesi dell'incontro nel nostro sito: https://www.fondazionebassetti.org/it/focus/2018/01/tra_salute_e_benessere_tecnolo.html Un incontro del 13 settembre 2017 che, alla luce della pandemia, offre numerosi spunti di riflessione.

Prima parte: Federica Lucivero. Introduce Angela Simone Federica Lucivero, senior researcher al Centro Ethox al Big Data Institute dell'Università di Oxford e coordinatrice del network Digital Health al King's College di Londra. Protagoniste del seminario tenutosi presso la Fondazione sono state le tecnologie informatiche emergenti applicate al contesto sanitario (app per la salute, sensori indossabili, portali online) e le questioni di responsabilità e di governance che nascono dall'ambiguità normativa dei device che si collocano al confine tra la sfera sanitaria e quella del lifestyle. Siamo di fronte a strumenti tecno-scientifici che appartengono al dominio della medicina, e come tali sono configurabili e regolabili con norme, prassi e certificazioni tipiche di questo ambito? O siamo di fronte a oggetti che si insinuano nelle intercapedini di diversi mondi, che spesso sfruttano questa zona grigia? Video, slide, immagini, sintesi dell'incontro nel nostro sito: https://www.fondazionebassetti.org/it/focus/2018/01/tra_salute_e_benessere_tecnolo.html Un incontro del 13 settembre 2017 che, alla luce della pandemia, offre numerosi spunti di riflessione.

Terza parte: Federica Lucivero. Dibattito Federica Lucivero, senior researcher al Centro Ethox al Big Data Institute dell'Università di Oxford e coordinatrice del network Digital Health al King's College di Londra. Protagoniste del seminario tenutosi presso la Fondazione sono state le tecnologie informatiche emergenti applicate al contesto sanitario (app per la salute, sensori indossabili, portali online) e le questioni di responsabilità e di governance che nascono dall'ambiguità normativa dei device che si collocano al confine tra la sfera sanitaria e quella del lifestyle. Siamo di fronte a strumenti tecno-scientifici che appartengono al dominio della medicina, e come tali sono configurabili e regolabili con norme, prassi e certificazioni tipiche di questo ambito? O siamo di fronte a oggetti che si insinuano nelle intercapedini di diversi mondi, che spesso sfruttano questa zona grigia? Video, slide, immagini, sintesi dell'incontro nel nostro sito: https://www.fondazionebassetti.org/it/focus/2018/01/tra_salute_e_benessere_tecnolo.html Un incontro del 13 settembre 2017 che, alla luce della pandemia, offre numerosi spunti di riflessione.

In today’s episode, we will speak with Jesse Anderson and learn how to run successful big data projects and how to resource your teams. Jesse is a big data expert at Big Data Institute, who’s worked with startups to Fortune 100 companies. He has taught over 30,000 people the skills to become data engineers and is published in prestigious publications such as The Wall Street Journal, CNN, BBC, NPR, Engadget, and Wired. Top 3 Value Bombs:It’s not easy to retool your traditional DW team to support big data technologiesA general ratio you should have is, 2-5 data engineers for every 1 data scientistThe importance of having three data teams and having them staffed properly which include operations, data engineers, and data scientists

Christophe Fraser of Oxford’s Big Data Institute, who advises the UK’s NHS COVID-19 Tracing app, and Prof Oliver Pybus discuss the opportunities and challenges of successfully applying new technologies to pandemics past, present, and future. The COVID-19 pandemic has become a defining event of the 21st century. New technologies such as ubiquitous smartphones and virus genome sequencing offer powerful new ways to understand virus transmission and to tackle the problem of epidemic spread. But can those new tools be deployed fast enough to make a real difference to public health? And can we balance the need for privacy with the life-saving benefits of understanding how transmission occurs?

Christophe Fraser of Oxford’s Big Data Institute, who advises the UK’s NHS COVID-19 Tracing app, and Prof Oliver Pybus discuss the opportunities and challenges of successfully applying new technologies to pandemics past, present, and future. The COVID-19 pandemic has become a defining event of the 21st century. New technologies such as ubiquitous smartphones and virus genome sequencing offer powerful new ways to understand virus transmission and to tackle the problem of epidemic spread. But can those new tools be deployed fast enough to make a real difference to public health? And can we balance the need for privacy with the life-saving benefits of understanding how transmission occurs?

In this episode of the Data Exchange, our special correspondent and editor Jenn Webb organized a mini-panel composed of myself and Jesse Anderson, Managing Director at the Big Data Institute. Jesse is the author of a recent book entitled “Data Teams: A Unified Management Model for Successful Data-Focused Teams”.Subscribe: Apple, Android, Spotify, Stitcher, Google, and RSS.Download the 2020 NLP Survey Report and learn how companies are using and implementing natural language technologies.Detailed show notes can be found on The Data Exchange web site.Subscribe to The Gradient Flow Newsletter.

In this episode of Experiencing Data, I speak with Jesse Anderson, who is Managing Director of the Big Data Institute and author of a new book titled, Data Teams: A Unified Management Model for Successful Data-Focused Teams. Jesse opens up about why teams often run into trouble in their efforts to build data products, and what can be done to drive better outcomes.  In our chat, we covered:  Jesse’s concept of debugging teams How Jesse defines a data product, how he distinguishes them from software products What users care about in useful data products Why your tech leads need to be involved with frontline customers, users, and business leaders  Brian’s take on Jesse’s definition of a “data team” and the roles involved-especially around two particular disciplines  The role that product owners tend to play in highly productive teams What conditions lead teams to building the wrong product How data teams are challenged to bring together parts of the company that never talk to each other – like business, analytics, and engineering teams The differences in how tech companies create software and data products, versus how non-digital natives often go about the process Quotes from Today’s Episode “I have a sneaking suspicion that leads and even individual contributors will want to read this book, but it’s more [to provide] suggestions for middle,upper management, and executive management.” – Jesse “With data engineering, we can’t make v1 and v2 of data products. We actually have to make sure that our data products can be changed and evolve, otherwise we will be constantly shooting ourselves in the foot. And this is where the experience or the difference between a data engineer and software engineer comes into place.” – Jesse “I think there’s high value in lots of interfacing between the tech leads and whoever the frontline customers are…” – Brian “In my opinion-and this is what I talked about in some of the chapters-the business should be directly interacting with the data teams.” – Jesse “[The reason] I advocate so strongly for having skilled product management in [a product design] group is because they need to be shielding teams that are doing implementation from the thrashing that may be going on upstairs.” – Brian “One of the most difficult things of data teams is actually bringing together parts of the company that never talk to each other.” – Jesse Links Big Data Institute Data Teams: A Unified Management Model for Successful Data-Focused Teams  Follow Jesse on Twitter Connect with Jesse on LinkedIn Transcript Brian: Hello, everyone, welcome back to Experiencing Data. This is Brian T. O’Neill, and today I have Jesse Anderson on the line, the managing director of the Big Data Institute. Jesse, what’s going on? Jesse: Not much. Great to be here. Thank you for inviting me. Brian: Yeah. So, you have a new book out, this is not your first text. So, first of all, congratulations on that. I know, it’s always a slog getting through a book, at least that’s what everyone says that writes books. So, why do we need a book about data teams? Jesse: you need a book about data teams because I wanted to bring the other teams into the picture. And instead of just focusing on the data s

La pandemia è ancora in corso, una seconda ondata sta preoccupando tutto il mondo e le curve epidemiche stanno mostrando una accelerazione esponenziale dei contagi dappertutto. Il dibattito sull'importanza del contact tracing e sul funzionamento delle App è ancora in corso, ma questi strumenti sono l'unica strada perseguibile poiché non ci sono difese per un virus che si propaga velocemente prima che appaiono i sintomi, e quindi la tempestività di intervento diventa un fattore critico. Con la pandemia in corso, saltano i sistemi sanitari mondiali e siamo costretti ad andare in lockdown perché gli ospedali devono funzionare per tutte le patologie.Luca Ferretti si sta occupando di questo tema dall'inizio della pandemia e in questo video presenta i suoi paper e ne discute con Aureliano Stingi, Domenico Somma, Thomas e Gianluca. Luca Ferretti e' Ricercatore Senior in statistica genetica e dinamica dei patogeni presso il Big Data Institute dell'Università di Oxford (UK). La sua ricerca applica approcci interdisciplinari tra epidemiologia, genetica e evoluzione dei patogeni a malattie infettive virali come AIDS, afta epizootica e peste suina africana. Al momento lavora su epidemiologia di COVID-19 e tracciamento digitale dei contatti, di cui ha mostrato per primo l'utilità. Membro della task-force contro il COVID-19 del Ministero dell'Innovazione, ha supportato sia il NHSX inglese che il Ministero dell'Innovazione nello sviluppo di app per il tracciamento dei contatti.Su twitter è @LucaFerrettiEvo

Gareth speaks with Dr. Min-Huei Hsu, Dean of the Big Data Institute at Taipei Medical University, and Dr. Ryan Engen, a diplomat with the US State Department about how Taiwan leveraged both Big Data and past lessons learned to lead the world in combating COVID-19.

Today's episode is an interview with Jesse Anderson, a preeminent expert who teaches software engineers how to become data scientists and data engineers. He has years under his belt teaching at Fortune 100 companies and startups alike. Jesse is a data engineer, creative engineer and managing director of Big Data Institute.In this talk, Jesse reveals the exponential ROI from big data and how it can shift a data “can't” into an income-generating “CAN.” He shares how companies leverage big data to gain a competitive advantage in their marketplace and explains why a solid management team is critical for the successful implementation of big data strategies. After this interview is complete, you'll have clarity on how to leverage big data - and what to do if your team hits a roadblock. Tune in and enjoy. 02:00 - 13:00 - Harnessing big data and how big companies leverage big data technologies13:00 - 25:00 - Avoiding big mistakes and common issues in big data25:00 - 38:00 - Amazon's interesting wins and how they made it work using big data38:00 - 50:00 - The value of cross-functional, aggregated teams - and how to manage them50:00 - 01:02:00 - Why stuck teams need help - and how Jesse gets teams out of their rut01:02:00 - 01:15:30 - On asking better questions and why you shouldn't ever half-ass big data

Gil McVean, Big Data Institute, gives the seventh talk in the first Ethics in AI seminar, held on November 11th 2019.

Gil McVean, Big Data Institute, gives the seventh talk in the first Ethics in AI seminar, held on November 11th 2019.

In this episode of the Data Show, I spoke with Jesse Anderson, managing director of the Big Data Institute, and my colleague Paco Nathan, who recently became co-chair of Jupytercon. This conversation grew out of a recent email thread the three of us had on machine learning engineers, a new job role that LinkedIn recently pegged […]

Catherine Matacic—online news editor for Science—talks with Sarah Crespi about how geoengineering could reduce the harshest impacts of climate change, but make them even worse if it were ever turned off. Sarah also interviews Augustine Kong of the Big Data Institute at the University of Oxford in the United Kingdom about his Science paper on the role of noninherited “nurturing genes.” For example, educational attainment has a genetic component that may or may not be inherited. But having a parent with a predisposition for attainment still influences the child—even if those genes aren't passed down. This shift to thinking about other people (and their genes) as the environment we live in complicates the age-old debate on nature versus nurture. Listen to previous podcasts. [Image: Collection of Dr. Pablo Clemente-Colon, Chief Scientist National Ice Center; Music: Jeffrey Cook]

Catherine Matacic—online news editor for Science—talks with Sarah Crespi about how geoengineering could reduce the harshest impacts of climate change, but make them even worse if it were ever turned off. Sarah also interviews Augustine Kong of the Big Data Institute at the University of Oxford in the United Kingdom about his Science paper on the role of noninherited “nurturing genes.” For example, educational attainment has a genetic component that may or may not be inherited. But having a parent with a predisposition for attainment still influences the child—even if those genes aren’t passed down. This shift to thinking about other people (and their genes) as the environment we live in complicates the age-old debate on nature versus nurture. Listen to previous podcasts. [Image: Collection of Dr. Pablo Clemente-Colon, Chief Scientist National Ice Center; Music: Jeffrey Cook]

The first Oracle Developer Podcast for 2018 brings together a panel of experts whose specialties cover a broad spectrum, including cloud computing, big data, security, open source, agile, domain driven design, Pattern-Oriented Software Architecture, Internet of Things, and more. The thread that connects these five people is that they are part of the small army of experts that will be presenting at the 2018 Jfokus Developers Conference. February 5-7, 2018 in Stockholm. In this freewheeling discussion the panelists talk about the trends and technologies that have captured their interest, the work that consumes most of their time, and the issues that concern them as IT professionals. Then, to wrap things up, you'll get a quick preview of their respective sessions at Jfokus. The Panelists Jesse Anderson: Data Engineer, Creative Engineer and Managing Director of Big Data Institute. Benjamin Cabé: IoT Program Manager and an Evangelist with the  Eclipse Foundation. Kevlin Henney: Consultant, programmer, speaker, trainer, writer and owner of Curbralan. Siren Hofvander: Chief Security Officer with Min Doktor, a digital healthcare provider in Sweden. Dan Bergh Johnsson: Agile aficionado, Domain Driven Design enthusiast, and code quality craftsman with Omegapoint. Click here for the complete program show notes, including additional content from the panelists.

Tom Nichols, Big Data Institute, University of Oxford, gives a talk for the Oxford Autumn School in Cognitive Neuroscience, held in 28th-29th September 2017, Sherrington Lecture Theatre, University of Oxford.

Snapchat unveiled its Snap Maps feature, which allows you to see where your friends are located. It allows people to view the snaps of those in a certain area. It also will track where you are which could be used to stalk or bully other people. Guest - Dr. Ann Cavoukian, Executive Director of the Privacy and Big Data Institute, Ryerson University

Dr. Ann Cavoukian, Executive Director of the Privacy and Big Data Institute and former privacy commissioner joins the Oakley Show to tell us about the "protecting data at the border act" introduced today

Dr. Ann Cavoukian is the Executive Director of the Privacy &Big Data Institute and former Information and Privacy Commissioner of Ontario. She joins the Oakley Show and talks about how these government organizations collect and share information.

Man charged partially based on pace maker info

We continue our discussion with Dr. Ann Cavoukian. She is currently Executive Director of Ryerson University’s Privacy and Big Data Institute and is best known for her leadership in the development of Privacy by Design (PbD). In this segment, Cavoukian tells us that once you’ve involved your customers in the decision making process, “You won’t believe the buy-in you will get under those conditions because then you’ve established trust and that you’re serious about their privacy.” We also made time to cover General Data Protection Regulation (GDPR) as well as three things organizations can do to demonstrate that they are serious about privacy. Learn more about Dr. Cavoukian: Follow her on Twitter: @AnnCavoukian Read her book: Who Knows: Safeguarding Your Privacy in a Networked World Transcript Cindy Ng: Dr. Cavoukian, besides data minimalization, de-identification, user access control, what are some other concrete steps that businesses can take to benefit from protecting privacy? Dr. Cavoukian: I think one of the things businesses don't do very well is involve their customers in the decisions that they make, and I'll give you an example. Years ago I read something called "Permission Based Marketing" by Seth Godin, and he's amazing. And I read it, and I thought, "Oh this guy must have a privacy background," because it was all about enlisting the support of your customers, gaining their permission and getting them to, as Godin said, "Put their hand up and say 'count me in.'" So I called him, he was based in California at the time, and I said, "Oh Mr. Godin, you must have a privacy background?" And he said something like, "No, lady, I'm a marketer through and through, but I can see the writing on the wall. We've gotta engage customers, get them involved, get them to wanna participate in the things we're doing." So, I always tell businesses that are serious about privacy, "First of all, don't be quiet about it. Shout it from the rooftops, the lengths you're going to, to protect your customer's privacy. How much you respect it, how user-centric your programs are, and you're focused on their needs in delivering." And, then, once they understand this is the background you're bringing, and you have great respect for privacy, in that context you say, "We would like you to consider giving us permission to allow it for these additional secondary uses. Here's how we think it might benefit you, but we won't do it without your positive consent." You wouldn't believe the buy-in you will get under those conditions because then you have established a trusted business relationship. They can see that you're serious about privacy, and then they say, "Well by all means, if this will help me, in some way, use my information for this additional purpose." You've gotta engage the customers in an active dialog. Cindy Ng: So ask, and you might receive. Dr. Cavoukian: Definitely, and you will most likely receive. Cindy Ng: In sales processes they're implementing that as well, "Is it okay if I continue to call you, or when can I call you next?" So they're constantly feeling they're engaged and part of the process, and it's so effective. Dr. Cavoukian: And I love that. Myself, as a customer... I belong to this air miles program, and I love it, because they don't do anything without my positive consent. And, yet, I benefit because they send me targeted ads and things I'm interested in. And I'm happy to do that, and then I get more points and then it just continues to be a win-win. Cindy Ng: Did you write anything about user access controls? What are your thoughts on that? Dr. Cavoukian: We wrote about it in the context of that you've gotta have restricted access to those who have... I was gonna say, "Right to know." Meaning there are some business purpose for which they're accessing the data. And that can be...when I say, "business purpose," I mean that broadly, in a hospital. People who are taking care of a patient, in whatever context, it can be in the lab. They go there for testing. Then they go for an MRI, and then they go... So there could be a number of different arms that have legitimate access to the data, because they've gotta process it in a variety of different ways. That's all legitimate, but those people who aren't taking care of the patient, in some broad manner, should have absolutely complete restricted access to the data. Because that's when the snooping and the rogue employee... Cindy Ng: Curiosity. Dr. Cavoukian: ...picture, the curiosity, takes you away, and it completely distorts the entire process in terms of the legitimacy of those people who should have access to it, especially in a hospital context, or patient context. You wanna enable easy access for those who have a right to know because they're treating patients. And then the walls should go up for those who are not treating in any manner. It'd be difficult to do, but it is imminently doable, and you have to do it because that's what patients expect. Patients have no idea that someone might be just, out of curiosity, looking at their file. You've had a breast removed, you had... I mean horrible things happen. Cindy Ng: Tell us about GDPR, and it's implications on Privacy by Design. Dr. Cavoukian: For the first time, right now the EU has the General Data Protection Regulation, which passed for the first time, ever. It has the words, the actual words, "Privacy by Design" and "Privacy as the default" in the stature. Cindy Ng: That's great. Dr. Cavoukian: It's a first, it's really huge, but what that means, it will strengthen those laws far higher than the U.S. laws. We talked about privacy as the default. It's the model of positive consent. It's not just looking for the opt out box. It's gonna really raise the bar, and that might present some problems in dealing with laws in the states. Cindy Ng: Then there's also their right to be forgotten, and we live in such a globalized world, people both doing business in the states and in Europe, it's been complicated. Dr. Cavoukian: It does get very complicated. What I tell people everywhere that I go to speak is that if you follow the principles of Privacy by Design, which in itself raised the bar dramatically from most legislation, you will virtually be assured of complying with your regulations, whatever jurisdiction you're in. Because you're following the highest level of protection. So that's another attractive feature about Privacy by Design is it offers such a high level of protection that you're virtually assured of regulatory compliance, whatever jurisdiction you're in. And in the U.S., I should say, that the FTC, the Federal Trade Commission, a number of years ago, under Jon Leibowitz, when he was Chair, they made Privacy by Design the first of three best practices that the FTC recommended. And since he's left, and Chairwoman Edith Ramirez is the Chair, she has also followed Privacy by Design and Security by Design, which are absolutely, interchangeably critical, and they are holding this high bar. So, I urge companies always to follow this to the extent that they can, because it will elevate their standing, both with the regulatory bodies, like the FTC, and with commissioners, and jurisdictions, and the EU, and Australia, and South America, South Africa. There's something called GPN, the Global Privacy Network, and a lot of the people who participate in these follow these discussions. Cindy Ng: What are three things that organizations can do in terms of protecting their consumers' privacy? Dr. Cavoukian: So, when I go to a company, I speak to the board of directors, their CEO, and their senior executive. And I give them this messaging about, "You've gotta be inclusive. You have to have a holistic approach to protecting privacy in your company, and it's gotta be top down." If you give the messaging to your frontline folks that you care deeply about your customer's privacy, you want them to take it seriously, that message will emanate. And, then what happens from there, the more specific messaging is, what you say to people, is you wanna make sure that customers understand their privacy is highly respected by this company. "We go to great lengths to protect your privacy." You wanna communicate that to them, and then you have to follow up on it. Meaning, "We use your information for the purpose intended that we tell you we're gonna use it for. We collect it for that purpose. We use it for that purpose." And then, "Privacy is the default setting. We won't use it for anything else without your positive consent after that, for secondary uses." So that's the first thing I would do. Second thing I would do is I would have at least quarterly meetings with staff. You need to reinforce this message. It's gotta be spread across the entire organization. It can't just be the chief privacy officer who's communicating this to a few people. You gotta get everyone to buy into this, because you... I was gonna say the lowest. I don't mean low in terms of category, but the frontline clerk might be low on the totem pole, but they may have the greatest power to breach privacy. So they have to understand, just like the highest senior manager has to understand, how important privacy is and why and how you can protect it. So have these quarterly meetings with your staff. Drive the message home, and it can be as simple as them understanding that this is... You're gonna get what I call, "privacy payoff." By protecting your customer's privacy, it's gonna yield big returns for your company. It will increase customer confidence and enhance customer trust, and that will increase our bottom line. And the third thing, I know this is gonna a little pompous, but I would invite, and only because this happened to me, I've been invited in to speak to a company, like, once a year. And you invite everybody, from top to bottom. You open it up and... People need to have these ideas reinforced. It has to be made real. "Is this really a problem?" So, you bring in a speaker. I'm using myself as an example because I've done it, but it can be anybody who can speak to what happens when you don't protect your customer's privacy. It really helps for people inside a company, especially those doing a good job, to understand what can happen when you don't do it right and what the consequences are to both the company and to employees. They're huge. You can lose your jobs. The company could go under. You could be facing class action lawsuits. And I find that it's not all a bad news story. I give the bad news, what's happening out there and what can happen, and then I applaud the behavior of the companies. And what they get is this dual message of, "Oh my God, this is real. This has real consequences when we fail to protect customer's privacy, but look at the gains we have, look at the payoff in doing so." And it makes them feel really good about themselves and the job that they're doing, and it underscores the importance of protecting customer's privacy.

I recently had the chance to speak with former Ontario Information and Privacy Commissioner Dr. Ann Cavoukian about big data and privacy. Dr. Cavoukian is currently Executive Director of Ryerson University’s Privacy and Big Data Institute and is best known for her leadership in the development of Privacy by Design (PbD). What’s more, she came up with PbD language that made its way into the GDPR, which will go into effect in 2018. First developed in the 1990s, PbD addresses the growing privacy concerns brought upon by big data and IoT devices. Many worry about PbD’s interference with innovation and businesses, but that’s not the case. When working with government agencies and organizations, Dr. Cavoukian’s singular approach is that big data and privacy can operate together seamlessly. At the core, her message is this: you can simultaneously collect data and protect customer privacy. Transcript Cindy Ng With Privacy by Design principles codified in the new General Data Protection Regulation, which will go into effect in 2018, it might help to understand the intent and origins of it. And that's why I called former Ontario Information and Privacy Commissioner, Dr. Ann Cavoukian. She is currently Executive Director of Ryerson University's Privacy and Big Data Institute and is best known for her leadership in the development of Privacy by Design. When working with government agencies and organizations, Dr. Cavoukian's singular approach is that big data and privacy can operate together seamlessly. At the core, her message is this, you can simultaneously collect data and protect customer privacy. Thank you, Dr. Cavoukian for joining us today. I was wondering, as Information and Privacy Commissioner of Ontario, what did you see what was effective when convincing organizations and government agencies to treat people's private data carefully? Dr. Cavoukian The approach I took...I always think that the carrot is better than the stick, and I did have order-making power as Commissioner. So I had the authority to order government organizations, for example, who were in breach of the Privacy Act to do something, to change what they were doing and tell them what to do. But the problem...whenever you have to order someone to do something, they will do it because they are required to by law, but they're not gonna be happy about it, and it is unlikely to change their behavior after that particular change that you've ordered. So, I always led with the carrot in terms of meeting with them, trying to explain why it was in both their best interest, in citizens' best interest, in customers' best interest, when I'm talking to businesses. Why it's very, very important to make it...I always talk about positive sum, not zero sum, make it a win-win proposition. It's gotta be a win for both the organization who's doing the data collection and the data use and the customers or citizens that they're serving. It's gotta be a win for both parties, and when you can present it that way, it gives you a seat at the table every time. And let me explain what I mean by that. Many years ago I was asked to join the board of the European Biometrics Forum, and I was honored, of course, but I was surprised because in Europe they have more privacy commissioners than anywhere else in the world. Hundreds of them, they're brilliant. They're wonderful, and I said, "Why are you coming to me as opposed to one of your own?" And they said, "It's simple." They said, "You don't say 'no' to biometrics. You say 'yes' to biometrics, and 'Here are the privacy protective measures that I insist you put on them.'" They said, "We may not like how much you want us to do, but we can try to accommodate that. But what we can't accommodate is if someone says, 'We don't like your industry.'" You know, basically to say "no" to the entire industry is untenable. So, when you go in with an "and" instead of a "versus," it's not me versus your interests. It's my interests in privacy and your interests in the business or the government, whatever you're doing. So, zero sum paradigms are one interest versus another. You can only have security at the expense of privacy, for example. In my world, that doesn't cut it. Cindy Ng Dr. Cavoukian, can you tell us a little bit more about Privacy by Design? Dr. Cavoukian I really crystallized Privacy by Design really after 9/11, because at 9/11 it became crystal clear that everybody was talking about the vital need for public safety and security, of course. But it was always construed as at the expense of privacy, so if you have to give up your privacy, so be it. Public safety's more important. Well, of course public safety is extremely important, and we did a position piece at that point for our national newspaper, "The Globe and Mail," and the position I took was public safety is paramount with privacy embedded into the process. You have to have both. There's no point in just having public safety without privacy. Privacy forms the basis of our freedoms. You wanna live in free democratic society, you have to be able to have moments of reserve and reflection and intimacy and solitude. You have to be able to do that. Cindy Ng Data minimalization is important, but what do you think about companies that do collect everything with hopes that they might use it in the future? Dr. Cavoukian See, what they're asking for, they're asking for trouble, because I can bet you dollars to doughnuts that's gonna come back to bite you. Because, especially with data, that you're not clear about what you're gonna do with it, so you got data sitting there. What data does is in identifiable form is attracts hackers. It attracts rogue employees on the inside who will make inappropriate use of the data, sell the data, do something with the data. It just...you're asking for trouble, because keeping data in identifiable form, once the uses have been addressed, just begs trouble. I always tell people, if you wanna keep the data, keep the data, but de-identify it. Strip the personal identifiers, make sure you have the data aggregated, de-identified, encrypted, something that protects it from this kind of rogue activity. And you've been reading lately all about the hackers who are in, I think they were in the IRS for God's sakes, and they're getting in everywhere here in my country. They're getting into so many databases, and it's not only appalling in terms of the data loss, it's embarrassing for the government departments who are supposed to be protecting this data. And it fuels even additional distrust on the part of the public, so I would say to companies, "Do yourself a huge favor. You don't need the data, don't keep it in identifiable form. You can keep it in aggregate form. You can encrypt it. You can do lots of things. Do not keep it in identifiable form where it can be accessed in an unauthorized manner, especially if it's sensitive data." Oh my god, health data...Rogue employees, we have a rash of it here, where...and it's just curiosity, it's ridiculous. The damage is huge, and for patients, and I can tell you, I've been a patient in hospitals many times. The thought that anyone else is accessing my data...it's so personal and so sensitive. So when I speak this way to boards of directors and senior executives, they get it. They don't want the trouble, or I haven't even talked costs. Once these data breaches happen these days, it's not just lawsuits, they're class action lawsuits that are initiated. It's huge, and then the damage to your reputation, the damage to your brand, can be irreparable. Cindy Ng Right. Yeah, I remember Meg Whitman said something about how it takes years and years to build your brand and reputation and seconds ruined. Dr. Cavoukian Yeah, yes. That is so true. There's a great book called "The Reputation Economy" by Michael Fertik. He's the CEO of reputation.com. It's fabulous. You'd love it. It's all about exactly how long it takes to build your reputation, how dear it is and how you should cherish it and go to great lengths to protect it. Cindy Ng Can you speak about data ownership? Dr. Cavoukian You may have custody and control over a lot of data, your customer's data, but you don't own that data. And with that custody and control comes an enormous duty of care. You gotta protect that data, restrict your use of the data to what you've identified to the customer, and then if you wanna use it for additional purposes, then you've gotta go back to the customer and get their consent for secondary uses of the data. Now, that rarely happens, I know that. In Privacy by Design, one of the principles talks about privacy as the default setting. The reason you want privacy to be the default setting...what that means is if a company has privacy as the default setting, it means that they can say to their customers, "We can give you privacy assurance from the get-go. We're collecting your information for this purpose," so they identify the purpose of the data collection. "We're only gonna use it for that purpose, and unless you give us specific consent to use it for additional purposes, the default is we won't be able to use it for anything else." It's a model of positive consent, it gives privacy assurance, and it gives enormous, enormous trust and consumer confidence in terms of companies that do this. I would say to companies, "Do this, because it'll give you a competitive advantage over the other guys." As you know, because you sent it to me, the Pew Research Center, their latest study on Americans' attitudes, you can see how high the numbers are, in the 90 percents. People have had it. They want control. This is not a single study. There have been multiple surveys that have come out in the last few months like this. Ninety percent of the public, they don't trust the government or businesses or anyone. They feel they don't have control. They want privacy. They don't have it, so you have, ever since, actually, Edward Snowden, you have the highest level of distrust on the part of the public and the lowest levels of consumer confidence. So, how do we change that? So, when I talk to businesses, I say, "You change that by telling your customers you are giving them privacy. They don't even have to ask for it. You are embedding it as the default setting which means it comes part and parcel of the system." They're getting it. I do what I call my neighbors test. I explain these terms to my neighbors who are very bright people, but they're not in the privacy field. So, when I was explaining this to my neighbor across the street, Pat, she said, "You mean, if privacy's the default, I get privacy for free? I don't have to figure out how to ask for it?" And I said, "Yes." She said, "That's what I want. Sign me up!" See, people want to be given privacy assurance without having to go to the lengths they have to go to now to find the privacy policy, search through the terms of service, find the checkout box. I mean, it's so full of legalese. It's impossible for people to do this. They wanna be given privacy assurance as the default. That's your biggest bet if you're a private-sector company. You will gain such a competitive advantage. You will build the trust of your customers, and you will have enormous loyalty, and you will attract new opportunity. Cindy Ng What are your Privacy by Design recommendations for wearables and IoT innovators and developers? Dr. Cavoukian The internet of things, wearable devices and new app developers and start up...they are clueless about privacy, and I'm not trying to be disrespectful. They're working hard, say an app developer, they're working hard to build their app. They're focused on the app. That's all they're thinking about, how to deliver what the app's supposed to deliver on. And then you say, "What about privacy?" And they say, "Oh, don't worry about it. We've got it taken care of. You know, the third-party security vendor's gonna do it. We got that covered." They don't have it covered, and what they don't realize is they don't know they don't have it covered. "Give it to the security guys and they're gonna take care of it," and that's the problem. When I speak to app developers...I was at Tim O'Reilly's Web 2.0 last year or the year before, and there's 800 people in the room, I was talking about Privacy by Design, and I said, "Look, do yourself a favor. Build in privacy. Right now you're just starting your app developing, build it in right now at the front end, and then you're gonna be golden. This is the time to do it, and it's easy if you do it up front." I had dozens of people come up to me afterwards because they didn't even know they were supposed to. It had never appeared on their radar. It's not resistance to it. They hadn't thought of it. So our biggest job is educating, especially the young people, the app developers, the brilliant minds. My experience, it's not that they resist the messaging, they haven't been exposed to the messaging. Oh, I should just tell you, we started Privacy by Design certification. We've partnered with Deloitte and I’ll send you the link and we're, Ryerson University, where I am housed, we are offering this certification for Privacy by Design. But my assessment arm, my audit arm, my partner, is Deloitte, and we're partnering together, and we've had a real, real, just a deluge of interest. Cindy Ng So, do you think that's also why people are also hiring Chief Privacy Officers? Dr. Cavoukian Yes. Cindy Ng What are some qualities that are required in a Chief Privacy Officer? Is it just a law background? Dr. Cavoukian No, in fact, I'm gonna say the opposite, and this is gonna sound like heresy to most people. I love lawyers. Some of my best friends are lawyers. Don't just restrict your hiring of Chief Privacy Officers to lawyers. The problem with hiring a lawyer is they're understandably going to bring a legal regulatory compliance approach to it, which, of course, you want that covered. I'm not saying...You have to be in compliance with whatever legislation is in your jurisdiction. But if that's all you do, it's not enough. I want you to go farther. When I ask you to do Privacy by Design, it's all about raising the bar. Doing technical measures such as embedding privacy into the design that you're offering into the data architecture, embedding privacy as a default setting. That's not a legalistic term. It's a policy term. It's computer science. It's a... You need a much broader skill set than law alone. So, for example, I'm not a lawyer, and I managed to be Commissioner for three terms. And I certainly valued my legal department, but I didn't rely on it exclusively. I always went farther, and if you're a lawyer, the tendency is just to stick to the law. I want you to do more than that. You have to have an understanding of computer science, technology, encryption, how can you... De-identification protocols are critical, combined with the risk of re-identification framework. When you look at the big data world, the internet of things, they're going to do amazing things with data. Let's make sure it's strongly de-identified and resist re-identification attacks. Cindy Ng There have been reports that people can re-identify people without data. Dr. Cavoukian That's right, but if you examine those reports carefully, Cindy, a lot of them are based on studies where the initial de-identification was very weak. They didn't use strong de-identification protocols. So, like anything, if you start with bad encryption, you're gonna have easy decryption. So, it's all about doing it properly at the outset using proper standards. There's now four standards of de-identification that have all come out that are risk-based, and they're excellent. Cindy Ng Are you a fan of possibly replacing privacy policies with something simpler, like a nutrition label? Dr. Cavoukian It's a very clever idea. They have tried to do that in the past. It's hard to do, and I think your simplest one for doing the nutrition kinda label would be if you did embed privacy as the default setting. Because then you could have a nutrition label that said, "Privacy built in." You know how, I think, Intel had something years ago where you had security built it or something. You could say, "Privacy embedded in the system."

Should police be able to compel you to hand over your cell phone password?

Dr. Ann Cavoukian, Executive Director of the Privacy and Big Data Institute and former Ontario Privacy Commissioner 

The Ontario Provincial Police will be texting 7,500 cellphone users who were in the vicinity of a murder victim last December, hoping someone can offer information to help solve the cold case. Dr. Ann Cavoukian comments on the data canvassing by the OPP.

The Ontario Medical Association reportedly wants to challenge a landmark ruling by the province's privacy commissioner to release the names of Ontario's top-billing doctors. Libby is joined by Dr. Ann Cavoukian who is currently the Executive Director of the Privacy and Big Data Institute and was Ontario's longest serving Information and Privacy Commissioner. Also joining Libby is Dr. Douglas Mark - the interim president of Doctors Ontario to weigh in on this controversial topic.