

Host: Dr. Shoshana Ungerleider
This episode explores groundbreaking insights from Robert C. Green, a medical geneticist whose work in the BabySeq Project examines the potential of genomic sequencing in newborns to predict and prevent serious health issues.
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0:01This is TED Health, a podcast from TED, and I'm your host, Dr. Shoshana Ungerleider. A few years ago, I found out I carry a BRCA gene mutation, one that dramatically increases my lifetime risk for breast, ovarian, and even pancreatic cancers. That single piece of information changed the course of my life and my medical care. It also opened my eyes to just how powerful genetic knowledge can be when it comes to our health. But what if we didn't have to wait until adulthood or a diagnosis to find out what's in our DNA? At his talk at TED 2025, medical geneticist, physician, and public health researcher Robert C.
0:43Green shares a bold idea. Using genome sequencing not just as a diagnostic tool, but as a proactive step in every newborn's life. Imagine knowing from day one whether you're genetically predisposed to certain cancers, heart conditions, or rare diseases, and being able to act on that knowledge early. Through pioneering research and decades of clinical work, Robert is helping reframe genetic testing as not just a medical innovation, but a public health imperative. His work raises big questions. Who should have access to this information? How do we protect privacy and ensure equity? How do we empower people, not scare them, with what their DNA reveals?
1:29This is about more than science. It's about choice, access, equity, and the right to know what might lay ahead. Then stick around after the talk for my conversation with Robert, where we talk more about the promise and the ethical complexity of genomic medicine. But before we dive in, a quick break to hear from our sponsors.
1:54And now, Dr. Robert C. Green. Thank you. Before I get started, can I just tell you how I've been feeling this week? because my heart has been so excited and so full about the opportunity to share my work with you. But my heart is also breaking a little bit because everything you're going to hear about has been supported by the National Institutes of Health. And as you know, NIH is in trouble. So as you listen to this, please do whatever you can to help this great institution preserve the integrity of science and science funding. Right?
2:37So, on April 22nd, 2015, a four-day-old baby girl in Boston, let's call her baby Maria, became the first healthy infant in human history to have her genome comprehensively sequenced, comprehensively analyzed, as part of a clinical, controlled trial in preventive genomics. Now, why is this important? It's great to be first. But it's important because when children are ill, everybody's upset. But when children remain ill and doctors can't figure out what's going on, well, that casts their parents into a diagnostic odyssey that can take years and be incredibly agonizing. It can create all sorts of misunderstanding, misdiagnosis and mismanagement.
3:35Now, sometimes those children will go on to get genetic testing, and sometimes they'll find an answer. And sometimes those answers mean that you can treat the child, but by then it can be too late. The damage is permanent. This is particularly tragic because there are so many treatable genetic conditions today. And there are going to be even more with gene editing, cell and gene therapies. In fact, it's been suggested that over 90 percent of genetic conditions will be treatable in the next few years with gene editing. So the key to this is obviously finding these children early, actually analyzing their DNA at or shortly after birth.
4:25And so, 10 years ago, I pulled together a team at Harvard Medical School, Mass General Brigham, Broad Institute, Ariadne Labs, and got together with a brilliant group of co-leaders, Helen Beggs, Amy McGuire, Heidi Rehm, and Ingrid Holm. And together, we launched the BabySeq or Baby Sequencing Project, the world's first trial of newborn genomic sequencing. Now, when we presented this information at medical meetings, we didn't quite get the reaction we were hoping for. People were aghast. They thought we were going to do terrible medical things to these children. and they thought there was going to be catastrophic psychological distress, and they thought we're going to spend all sorts of money.
5:19So we've spent 10 years exquisitely studying the medical, behavioral and economic impact of newborn genetic sequencing. And we don't have all the answers yet, but I have to tell you that what we've discovered so far is pretty reassuring. Now, what was really surprising about this was what we found in these normal babies. If you take, let's say, 400 genes, which represent conditions that are treatable today, absolutely treatable, we found mutations in those genes in about 1 ,000 families, we found mutations in those genes in about 4 % of these babies. 4%. And if you expanded that gene list to be, let's say, 5 ,000 genes long, and that includes conditions that aren't treatable yet, conditions that maybe attack you in adulthood, we found an incredible 12 percent of these babies were carrying such mutations.
6:25Now remember, that doesn't mean that all of these children are going to get the disease, but it does mean that if you know the risk that the children have, then your pediatrician and your family can be on the lookout for vague symptoms that would otherwise be overlooked. This isn't a small problem. If this holds, that means in the United States there's over 400 ,000 babies a year that will carry these risk mutations. And worldwide, that's over 15 million babies a year that will carry these risk mutations. It's kind of ironic, isn't it, because these are individually rare diseases, many of them you won't even have heard of, but together they are a massive medical problem.
7:09Let me let you hear from a couple of the BabySeek mothers who've gone through this and hear what they have to say about the findings in their own children. Now, this was baby Adam who had an elastin gene mutation, which can be associated with a narrowed aorta. Finding out that your newborn has a heart problem of all things is absolutely terrifying. but knowing that we could be proactive gave us some peace of mind, that we were doing everything we could do instead of being surprised down the road. And in fact, after this mutation was found, a scan found that this baby's aorta was already mildly narrowed.
7:49It can now be followed and treated if it gets worse. Baby Cora, who's now almost nine years old, was found to have mutations suggestive of biotinidase deficiency, a partial biotinidase deficiency, which is absolutely necessary for proper brain development. So she takes a simple dietary supplement every day that's kept her brain safe. We give her a daily vitamin to treat her enzyme deficiency. We had to get creative at first, but now it's part of our routine. I'm just glad we discovered the conditions before there were any symptoms. And baby Jacob was one of four children who had mutations that created a predisposition for pediatric or adult-onset cancers.
8:35Now, in his case, the gene was BRCA2, or BRCA2, and nobody in the family knew that it was present. When we found out, we traced it back to his mother, who was surprised, but who could then take action. It turns out that I ultimately was carrying a mutation. I had risk-reducing and ultimately life-saving surgery, and I believe it was the right decision so I could be present for my son. So how can we bring this to every family that wants this insight? Well, there is a newborn screening system around most of the world. It looks for, in the United States, up to 75 treatable conditions, mostly metabolic conditions.
9:22But that system is overburdened, under-resourced, And since 2008, it's only added nine new conditions. And as we've just said, there are several hundred treatable genetic conditions today. So we're trying to work with these programs to bring genomics into them, but it's going to be very hard for them to keep up. Why are people so resistant? Why aren't we demanding this? Well, part of the reason is human psychology, right? You bring home this perfect little baby and you don't really want to look for something that might be wrong, even if intellectually you know it might be treatable. But we've got to get past that.
10:04The other reason is privacy concerns. And this is sort of ironic because, well, particularly for this crowd, privacy concerns are real. Your DNA is a biometric. It's kind of like a fingerprint. There's certainly some law enforcement considerations. But if somebody steals my genome, they really can't make much of it. Whereas if they steal my electronic footprint or your electronic footprint, there's a lot more harm that can be done. So I'm not saying we shouldn't be concerned about privacy. In fact, privacy is protected when you look for genomic information in a medical context, just like it's protected for your psychiatric history and your HIV status and so forth.
10:53It's also been confusing to have direct-to-consumer genetic testing. Now, these companies, for the most part, were very honest about what they offered. But they were not protected by these same legal protections as health care. And typical direct-to-consumer companies use a technology called genotyping. So they're looking for various markers in the genome, which is good for ancestry and traits, but not so good for mutations. For that, you really need the sequencing, every single letter of the DNA, and that's 5 ,000 times more granular. I also think there's a systematic or institutional resistance, right?
11:39Because genomics is the tip of the spear for preventive care. It's really the first in a series of things that we need to bring in order to preserve our health. Multiomics, proteomics, transcriptomics, wearables, all the exciting things we've heard about that will keep us well instead of simply treating us when we're sick. Now, I'm happy to tell you that I've co-founded an international consortium on newborn sequencing. It's grown to 27 groups around the world. They're all doing this in different healthcare systems. We get together, we compare notes, we share data. It's really exciting. I go to these annual meetings.
12:21It's the most exciting meeting I go to every year. We feel like we're inventing an entirely new field of medicine. But if we really want to invent the future, we've got to do something different. If we really want to invent the future, we've got to realize that a child's DNA doesn't change over time, but the science is changing all the time. And so what that means is we should sequence your child's DNA, and we should revisit and reanalyze that DNA over and over again to truly create the dream of genome-informed medicine. Because each and every year, there will be new insights and new treatments available.
13:05Well, this isn't offered anywhere in the world, but I'm happy to tell you that we are trying to build this. We are building an AI-enhanced digital health platform so that you, your grandchildren, your children, your pediatricians, your health care centers, your employers, your nations, can do this at scale. It's going to take a certain amount of courage to change the way we think about disease, to embrace the knowledge of risk in order to preserve our health rather than waiting for us and our children to get sick and treating them there. But if we can do this, if we can embrace this, we can save millions of lives and usher in an entirely new era of genome-inspired medicine.
14:01Thank you. Thank you.
14:19That was Dr. Robert C. Green at the 2025 TED Conference. Now I'm excited to present my follow-up interview with Robert. If you've ever wondered how personalized medicine could shape the future of prevention, or how to advocate for your own health more effectively, this is for you. Robert, let's start with the BabySeek project. Why did you feel it was important to study the impact of DNA testing in newborns? I got started with what you might call DNA first a number of years ago because there was so much genetic testing going on and people weren't really seeing the advantages of it. So, for example, when somebody got genetically tested for a heart problem, nobody was looking in their DNA to see if they also happened to carry a predisposition to cancer.
15:09So I helped solve that problem first with a set of policies that were adopted by the American College of Medical Genetics and Genomics, where we created a cohort of limited number of genes that every laboratory is now expected to look for when they do sequencing of any type. Did you know that there's probably been 100 million people who've had some form of genetic testing for research in the world, and almost none of them have ever received any benefit back. And there's all this information lurking in their genes that could have given them help. So we decided to do some experiments in that. We were the first to do that in the famous Framingham Heart Study and in the all-African-American Jackson Heart Study.
15:57And so we've developed some policies around recommendations for giving people some degree of return of results when they participate in genetics research. And from there, it was just a short hop to thinking, well, what would be the most beneficial, the most efficient, the biggest bang for your buck? And it turns out that if you could screen young children for treatable genetic conditions early, that's where you get the most effective use of genetic screening. So way back in 2013 or so, we came up with this idea of screening babies with genomic sequencing. Now, the idea was actually 30 to 40 years old, but we were the first to actually bring it to bear in a clinical trial, and that's the trial we called BabySeq Project.
16:49Wow. And yet, even with that promise, newborn screening today covers just a few dozen conditions, yet you've identified hundreds more that are treatable if they're caught early, right? So what's standing in the way of expanding this testing, and what would it take to make all that possible? Yeah, there's a wonderful newborn screening program today that's administered out of each state laboratory. It tests for up to 75 mostly metabolic conditions that are urgently needed to be discovered in a child. It's a huge success. It's been in place since the 1960s, but it's under-resourced and overburdened.
17:28And as you just mentioned, there are literally hundreds of genetic conditions that have treatments today that are simply not being looked for and they're not being found. So somehow we have to imagine either bringing genomic sequencing to these state-based public health laboratories or creating a whole new system for integrating them into the life of pediatric care. So you saw firsthand during the BabySeek project where babies had genetic mutations their families weren't expecting. What's one story or a discovery from the study that's really stuck with you? One of them was a little baby we'll call Adam who had an elastin gene mutation.
18:13And that can be associated with a narrowing of the aorta. And it can be a mild narrowing, which can get worse over time, and it can even be life-threatening. So we identified that the baby was absolutely normal, normal heart sounds, normal pink-cheeked baby, and followed up with an echocardiogram. And sure enough, that baby's aorta was already narrowed. Now, that baby may do fine, but now that narrowing can be monitored over time. And if it gets worse, it can be surgically corrected. That's one story that just reveals that we're not only looking for future risks. Sometimes we're uncovering something that's already there but hasn't been discovered until we got the clue that's in their DNA.
18:59Did these results that you found surprise you? And what did you learn that maybe you didn't see coming? What was most surprising was the number of babies that were carrying treatable mutations. By that, I mean they were carrying mutations for a condition for which there is a treatment. Now, remember, they're not all going to get this. Not every time a child is carrying a mutation are they going to develop the disease. But at least their families and their pediatricians can be alerted to recognize the signs way earlier than they would otherwise recognize them. It really depends how many genes you're looking at, Shoshana.
19:36We were looking at, say, 400 genes or so that are for eminently treatable conditions in the very early part of life. We found about 4 % of babies were carrying mutations in those genes. If we expanded the aperture and looked at almost 5 ,000 genes, these are genes for currently untreatable conditions or conditions that really happen later in life or even in adulthood, we found a remarkable 12 % of babies are carrying mutations. So a lot depends on where you draw that threshold for what you consider to be treatable or actionable. But somewhere between 4 % and 12 % of babies are carrying a risk factor that I think everyone should know about.
20:18Yeah. And just to be clear, it doesn't mean that the disease is going to manifest, correct? It's just a predisposition. Okay. And that's one of the actual misunderstandings. We know that 12 % of children don't develop genetic conditions. And so that's a glass half full, glass half empty scenario. Because if you believe that genetics is some sort of crystal ball and it's deterministic and everybody's going to get it, that doesn't even sound like a credible number. But if you realize that it's just a risk factor, just the way elevated cholesterol is a risk factor for heart disease, now you can be on the alert.
20:53You can surveil a child more carefully, particularly, let's say, for pediatric cancers. I mean, you've got a number of rare pediatric cancers, and instead of waiting until a child has some dwindles or some weakness or some nonspecific symptoms, nobody's even thinking about cancer, you can at least be on the lookout for it. And so you've said this before, I think, that our health care system isn't built for prevention. And at the same time, genetic testing feels like a significant form of prevention. So what would have to change for our system to actually support this kind of care, from how our doctors are trained to how insurance works?
21:33So many things. Yeah, people get very confused about genetic testing because it can truly be used in two distinctive ways. If someone is already sick, genetic testing can help you dive down and find out what the molecular cause of that disease is. That's what we might call diagnostic or indication-based testing. But what we're talking about is a completely different use case. Now we're talking about healthy individuals, healthy children, healthy adults, and you look at their genome in order to find something that they're at risk for but do not already have. Or maybe they already have it but it hasn't been recognized.
22:11That's screening. And so there are different criteria for screening. There are different use cases for screening. There are different thresholds for what you actually test for and what you reveal in screening. I've been really focusing on the screening aspect because I think it's underutilized and it could be much more happily utilized and life-saving than it actually is. And you're right. In order to do that, we'd have to shift the incentives in our entire healthcare system so that we reimbursed for preventive care. We recognized that we'd be saving money downstream. And our healthcare system in the United States is not well set up for that.
22:52Remember, we have an employer-based healthcare system, where people tend to churn through their insurance every 18 to 24 months. That's not a great setup for preventive care. So genomic screening may really actually get started more rapidly in other countries that have one-payer lifelong care, such as the UK. Genomic testing feels like just the beginning. What other tools or technologies do you think are going to transform how we prevent disease? I know that's a big question. You know, there's been so much buzz about precision care and preventive care. Some of it's very scientific. Some of it's more commercial.
23:34Some of it's very faddish. I do think that some of the resistance to genomics is because it challenges the status quo. I think if people realized how much benefit their children could potentially have if they were screened genomically, it would crack this thing open. It's like genomics is the tip of the spear. And if you accept that genomic screening is a good thing, you have to start thinking about all healthcare in a slightly different way. And that's going to open the door for really what we call multi-omics, proteomics, transcriptomics, the microbiome, the wearables that can predict, you know, using big data analysis and AI can predict what you are at probabilistic risk for.
24:20We really want to stay healthy. We don't just want a healthcare system that treats us when we're sick. And so genomics is sort of the unsung hero of this battle between sick care and proactive preventive care. And I think that's why there's partly so much resistance to it. Yes, there's concerns about insurance, there's concerns about privacy, but I think we've over-indexed on those, given the digital footprint we're willing to share with the world in terms of our credit card or our search histories. Genomics is a lot less threatening. But with all this innovation, some people understandably worry about genetic privacy, about what happens to their DNA data.
25:05Are there any real risks that we should be paying more attention to, and how can people make informed choices? I think there are real risks. There's a continuing concern that insurance companies could use this information against you. Now, there is a federal law that protects your health insurance from using any genomic information against you. And that same federal law protects you from your employer using any of that information against you. Other forms of insurance, life insurance, disability insurance are more protected on a state-by-state basis, so it's a little less clear. But in the last 10 years in adult genetics, almost no insurance companies have ever used this against anybody.
25:50So it's a theoretical risk of insurance discrimination, but people really feel it in their bones because they're so frightened of losing their insurance. The other part of your question, though, is about privacy. And, you know, I respect everyone's concern about privacy. But as I mentioned, we've sort of over-indexed on genomic privacy. It is a biometric, like a fingerprint. There are potential misuses in law enforcement and so forth. But if somebody steals your genomic code, unless they're very sophisticated, there's really not that much that's there. And if your genomic code is part of your general medical history and general medical data, it's protected by HIPAA and other federal laws in the United States.
26:44So I don't want to make light of anybody's concerns about privacy, but I do think we're over-indexing on privacy, and we've not quite recognized how much medical benefit could come from this. And I think when we do, you're going to see a big inflection in people's utilization. I would also mention that direct-to-consumer at-home genetic testing has confused the issue. I think actually those companies have been quite honest about what they offer and what their limitations are. But we all hoped for more. We all hoped that we'd be finding and preventing diseases. What those companies did were outside of the medical care system.
27:24They didn't have the same legal privacy protections, number one. Number two, they tended to use a technology called genotyping, which looks at specific markers along the genome. It's great for ancestry and some traits, but it's not so great for picking up mutations. For that, you want a more expensive technology called sequencing. And that technology is 5 ,000 times more granular than what you typically get in an at-home genetic test. So it's not that they're bad. I think they had the best interests of their customers at heart, but they were premature in the sense that they didn't have the full resolution available to find the kinds of mutations that would actually save people's lives.
28:12Now, you can get at-home medical-grade genetic tests, correct? And that is different than what you're mentioning, yes? That's right. And at-home is confusing because there are now both companies and healthcare systems that are ordering medical-grade genomic sequencing, and the kit can actually be mailed to your house for a saliva sample. So it is confusing to the general public. But if your listeners are interested in what to look for, here's a couple of things to look for. Was the test ordered by a physician? It doesn't have to be a physician you know, but was there a physician at least in the background that was ordering it?
28:51That usually puts it under HIPAA protection and makes the privacy more assured. Number two, is it sequencing or is it genotyping. If it's really going to be medical grade, it ought to be sequencing, which by the way is going to be a higher price point too. And number three, do they have some kind of follow-up, genetic counseling? Do they have some kind of rare disease clinicians or cancer specialists or somebody who is available to help navigate when you find a positive result or answer your questions when a result is negative? Those are the three things I think that are differentiating a bit of a Wild West in medical grade genetic testing, which is now out there.
29:36So access is a big piece of the puzzle. You've encouraged parents to consider genetic screening for their children, even if it means paying out of pocket. But how do we make sure this doesn't become something only wealthier families can afford? Because ideally, this type of care should be accessible to everyone. I think we're going to approach it from two directions. I think the public health newborn screening system is going to start carefully adding some genomic testing. It's going to be difficult because there are laboratories that collect these blood spots from children. It's also going to be difficult because what they do today is largely unconsented.
30:18Those heel sticks are just collected in the hospital, and the parents don't really have an opportunity to say no, whereas it's hard to imagine genetic testing could be done quite under the same umbrella. You may need to consent them. It's not clear how we would do that logistically, who would pay for it. But I do think that all of the state labs are realized there's an untapped treatability question here. And so they want to do it. Then I think from the other direction, you're going to find people who can pay for a service and get a much more extensive service. And in that realm, there will be advantages to people who are better resourced and can pay for it.
30:58But hopefully, the competition on the market means that prices will come down quickly, and all of the things that people are receiving that maybe only the wealthy can afford to begin with quickly become affordable to everybody else. And just like cell phones at the very beginning, you know, we're really high priced, and now almost everybody has a smartphone. That's how I hope there'll be kind of a pincer movement and we'll gradually approach from both angles until this is universally available to folks who want it. So looking beyond the U.S., since you published your BabySeq findings, researchers all over the world have picked up this work.
31:36What's something exciting or maybe surprising that you've seen come out of these international efforts? A couple years ago, I co-founded an international consortium on newborn sequencing because there were groups springing up all over the world to do this. They were doing it with different gene lists, different approaches, different consent models. And now we get together every year and we have subcommittees and we actually get to exchange best practices, talk about the data that we gather. And it's extremely exhilarating, Shoshana. I mean, I go to these meetings yearly and it's literally like we're inventing a new field of medicine.
32:11These are the vanguard of what's going to bring this to the rest of the world. And every part of the world may have a different emphasis. Where there's a single-payer system, this may make better economic sense. Where there are cultures that have first-cousin marriages and more consanguinity, there may be a different technology that lends itself to finding some of those considerations earlier. where there are specific religious considerations. Maybe things look a little different. So it's fascinating to see how different countries and different cultures are approaching this. But I've now traveled quite a bit speaking about this, and everybody's interested in it.
32:53And let me make it clear, again, that we didn't make up this idea. This idea was talked about before the Genome Project actually was started. People were envisioning a day when newborn children could have their genomes interpreted, and it could be a blueprint for their entire health. I'm just really proud that our project, the BabySeek Project, was the very first to comprehensively get out there and try that as part of a clinical trial protocol. It's just incredible. So with all this new information, what do we do with findings that don't have a clear path forward? I know that not everything you find on a genomic test will, again, manifest as a disease.
33:39But what if there are conditions that have no treatment yet or someone's predisposed to something like that or ones that don't show up until adulthood? It's a great question, and it's one of the questions that's paralyzed our feel in the sense that we can't even really agree on what we consider to be, quote, treatable. Or, if you used a different word, quote, actionable. I've been privately using the word treatable to mean that there is already a specific treatment to delay the symptomatic onset of condition or to reverse it. and I've been using the word actionable to mean that there is something you can do, for example, surveillance, x-rays, simply monitoring the child, echocardiograms, blood tests, whatever you can do to monitor the condition so that you're able to detect it as soon as possible.
34:32But there's no universal agreement on even what these terms mean. We did a study a couple years ago where we actually asked close to 300 rare disease specialists what would they feel are the most important genes to include on a newborn screening panel? And we got a huge bell curve where almost everybody agreed on about 20 of them, and then about 80 % agreed on another 40 to 100, and then about 50 % agreed on another 200. So there's not even consensus within the field. But the paper was very valuable because it shows anybody who's starting in the world what are the genes that almost everybody agrees upon?
35:14Robert, tell me about the company that you've created. So because there's a gap right now between what public health laboratories are able to add and what medical systems can afford to add, we've created a public benefit corporation called Nurture Genomics, which is going to make this available to parents, pediatric practices, and healthcare systems. And the idea is not to create a direct-to-consumer product, but to create a partnership, a navigation platform that allows pediatricians, families, and even healthcare systems to look for these in a baby and then to re-examine that genome on a regular basis.
36:00because science is changing so fast, Shoshana, that while the baby's DNA doesn't change over time, if you re-look at it again, you'll find new mutations that have just been discovered, and you'll have new treatments available. So the idea is to create a model with Nurture Genomics whereby people can test their child and then have that genome reinterpreted over time as the child grows. So we're testing that out. I hope that some of the children and grandchildren that I meet here today will be entered into this, and I hope it'll be a proof of concept that causes all society around the world to accelerate its movement toward this.
36:39That's so exciting. For those of us in medicine, most doctors, myself included, barely had more than one lecture about genetics in training, and I didn't train all that long ago. Why is that, and what can be done about it? I think there's still this notion that genomics is something that you can't do much about and that you should be scared of. I honestly think that this pivot is going to have to be led by families because medical education is slow to pick up on this. It is intuitively clear that recognizing some of this risk information ahead of time will benefit children because their pediatricians will now be alerted to the earliest symptoms.
37:24Shoshana, there was one story that I remember a father telling me that he felt so horrible. He had scolded his child as being lazy because they would walk slowly up the stairs, and it turned out to be a genetic neuromuscular disease. And if that mutation had simply been known since birth, not only would they never have scolded the child, there are clinical trials and new treatments for that very disease that are available today. So I do think that this is going to be somewhat people-driven. For example, some of the fertility industry, I think, has been kind of driven by society rather than by medicine.
38:03And I think we might find the same thing here. As parents start to benefit, they tell their friends, they tell their colleagues, I think we'll see more and more benefit and more and more demand for this. Thinking about the future, how do we prepare future doctors and patients to actually use this information to make better and more informed choices? Well, we did an experiment with adult genome sequencing with primary care docs who are also very resistant to genomics. Hey, I'm a primary care doc. to begin with. They are so overworked that try to add one more thing is, as you know, a huge strain.
38:38But we took a bunch of volunteer primary care docs and we gave them a minimalistic six-hour course in not genomics, but just how to interpret a genomic report and what to do with some of the basic things. And as they found these positives, it was so gratifying to them that they were finding somebody who they could prevent cancer in, that they sort of forgave us. And they realized that you didn't actually have to learn genomics, just like you don't have to learn nuclear physics to interpret an MRI. You just have to learn how to interpret the report and what to do next. So I think we don't have to make this more complicated than it is.
39:20We have to train physicians in what to do when they get a positive. And there are some pretty basic things we can train them to do that. We can incrementally grow the gene lists and the condition lists to get the most common things first. Did you know that one in 221 adults in the United States has familial hypercholesterolemia, a genetic condition that gives them a malignant level of high lipids and that can cause heart attacks and strokes in their 40s. Now, supposedly, we could pick this up with lipid screening, but we don't. In terms of screening, we miss them, we miss their relatives, and we could be aggressively treating these folks much, much earlier.
40:07So we could train primary care pediatricians and primary care adult docs on some of the basics first and gradually expand the portfolio of genes that we look for. We need them to let us in and do that, but I think there are ways to do that. Please do it. Dr. Robert Green, thank you so much for this conversation today. My pleasure. Thanks for having me.
40:32And that's it for today's episode. Thank you so much for listening. TED Health is a podcast from TED. And I'd love to hear your thoughts about this episode. Send me a message on Instagram at ShoshanaMD. This episode was produced by me, Shoshana Ungerleiter, and Jess Shane. Edited by Alejandra Salazar and fact-checked by Vanessa Garcia-Woodworth Special thanks to Maria Lages Farrah Degrunge Daniela Balarezo Constanza Gallardo Tansika Sangmarniwang and Roxanne Highlash
What if we could get a heads-up about serious health issues before they begin, from the moment a baby is born? In this groundbreaking talk, medical geneticist and physician-scientist Robert C. Green shares how his team at the BabySeq Project became the first in the world to comprehensively sequence and analyze the DNA of healthy infants, revealing hidden risks for treatable conditions. The future of medicine isn’t just about curing illness, he says — it's about predicting and preventing it.
After the talk, Shoshana interviews Robert on why he decided to study the impact of DNA testing in newborns, the fear with giving insurance companies access to additional information, and how to make this resource accessible to all parents.
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