StarTalk Radio - The Promise and Peril of the Genomic Revolution

Episode Date: April 29, 2016

Get an update from the front lines of the genomic revolution when Neil Tyson interviews Anne Wojcicki, co-founder/CEO of genetic testing company 23andMe. In studio, bioethicist Prof. Robert Klitzman provides perspective. Chuck Nice co-hosts. Subscribe to SiriusXM Podcasts+ on Apple Podcasts to listen to new episodes ad-free and a whole week early.

Welcome to StarTalk, your place in the universe where science and pop culture collide. StarTalk begins right now. This is StarTalk, and I'm your host, Neil deGrasse Tyson, your personal astrophysicist. And I'm also the director of New York City's Hayden Planetarium at the American Museum of Natural History. My co-host today, Chuck Nice. Chuck. Hey, what's up, Neil? Love you, man. Love you too, man. Love you, man. I love you.

Good times. Today, we're featuring my interview with Ann Wojcicki, co-founder and CEO of the genetic testing company 23andMe. And we'll be talking about the promises and the perils of the genomic revolution. I can't do that alone because I'm an astrophysicist. What the hell do I know about genes? So our guest today is Dr. Robert Klitzman, bioethicist and professor of psychiatry at Columbia University. And you co-founded Columbia Center for Bioethics. That's just awesome.

Somebody's got to do it. I think the world of astrophysicists. Okay. And you're author of the book, Am I My Genes? I like that. Am I my genes? Or not. Are you something else?

Right. Like my culottes. Okay. You see what I did there, Doc? That's right. So it's confronting fate and family secrets in the age of genetic testing. So what does 23andMean? It provides direct-to-consumer personal genome tests.

So you get, and they'll give you the whole genetic profile of you. Talk about profiling. Yeah, talk about profiling. It ain't just what your skin color is. Yo, you've got a 40% chance of developing whatever in 20 years. You have a 22%

chance of being denied a mortgage. But these are issues, actually. What was that? These are actual real issues, because there is genetic discrimination that's a major problem. Well, that's what we're going to get there. And so, once they sort of figure you out all right once you send in some sample cells body cells so they'll provide ancestry info that'd be as a minimum for sure and of course the next step would be health related uh info and it was founded in

2006 by linda avey paul suzna, and Ann Wojcicki. And so when I sat down with CEO Ann Wojcicki of 23andMe, I had to ask her, how do you get in the business of this? I'm always curious how you get from here to there. Let's find out. When you're in college, did you say to yourself, I want to start a company to map people's genes? That's really creepy. If you had said that, I would to start a company to map people's genes. That's really creepy. If you had said that, I would have said, nice to meet you.

You want to live in the other dorm. No. I definitely did not think about that then. When I was in college, I was pretty focused on having fun. And you majored in? Biology. Okay. I majored in biology.

Yes. And I love genetics. I always loved microbiology. And I always thought about doing something in science. I had dreams of being an MD, yes. And I love genetics. I always loved microbiology. And I always thought about doing something in science. I had dreams of being an MD, PhD. But actually, it was more my father is a physicist. And my father was part of something called the Superconducting Super Collider, which got shut down in 1990. And it was 10 years of my father's work that I saw him painfully involved.

But it taught me the importance of being able to communicate complicated ideas to non-scientists. And I think I really took away from that, that if you can't communicate what you're doing, no one's going to support it. And I think that happened a lot with the physicists. And so when I got into biology and I was on Wall Street for a while, and then I saw the human genome sequenced, and I realized, like, this is the next massive era of discovery, and that we're just starting to understand the genome, and how cool is it that if you can actually be part of it, and why is it that the layperson can't actually learn about it, but you should be able to follow all this progress with your own genome? Just to be clear, you are reflecting on the failure of your father to make the case for the superconducting

supercollider to Congress so that they would continue to fund it. And you said, I'm not going to make that mistake. Yeah. I think that part of the reason why that failed was because there was not a great understanding of what would actually come out of it. And even today, people understand Higgs, but most people will say, well, what do I get out of that? And I think that's part of what I've tried to say is teach everyone about the meaning of science and let people actually explore in their own genome and be part of the process. So, Robert, this word genome is currency today, but we've heard of genes. We've heard of DNA, chromosomes. Does genome have a precise definition?

Yes, it does. So we each have a molecular blueprint that is half from our mother, half from our father, and makes us and gives us the hair color and eye color that we have, and also predispositions to certain diseases. So some of us are more likely to get one disease or another. And what it is, is in almost every cell in our body, in the nucleus, there are 23 clumps of genetic material, DNA, which is deoxyribonucleic acid, but we'll just call it- Glad you guys abbreviated that one. All nine syllables. Right. Okay. And so there are 23 of these clumps from each parent that we get. And each clump consists of information. And the information is in a language that consists of four molecules that we abbreviate A, C, T, and G.

And so these letters laid out, A, C, T, G, laid out three billion times is a very long word, but that is the unique blueprint that makes me, yours is yours, yours is yours. And just those four, those are proteins, is that right? Or amino acids? Exactly right. Okay. So could you list them for us, please? So it's actinine, thymine, cysteine, and guanine. Guanine. Excellent. And the movie Gattaca used those four letters to spell its title exactly right Yeah, and so in the chapel used the the Sistine as well. There you go Okay track well go on travel carry you for this one, Chuck. That was quick.

I liked that. To give you an example of what that means is, so this is three billion letters. If this was behind you was a wall of books, that would be three billion letters. And so our alphabet is 26 letters. But if you just had four letters and you wrote A-C-T-G-G three billion times, A-C-T-G-G, A-C-T-C-C, whatever, we're 99.9% the same and we're 0.1% different, which means if I pull out one book, that's on that shelf, that's the amount by which each of us differs.

And what we can now do is we can tell someone what those three billion letters are for themselves. So the whole sequencing the genome is getting the sequence of letters. Exactly right. So genotyping is the act of doing so. That's pretty cool. It's very cool stuff. And I should say that the first time this was done was 15 years ago. 2000. 2000. Right. Okay, so hence the banner headline that the human genome has been solved.

In fact, we interviewed President Clinton on StarTalk. Yes. That's right. I don't mean to boast or anything. President Clinton, I just don't mean to boast. It was good for me too, man. It was good for me too. He was proud

that that happened under his watch. As he should be. That's all I'm saying. So getting back to my interview with Anne, I wanted to find out

what's the mission? Yes. You can genotype somebody, but now what are you going to do with it? Let's find out where we're going. We are about individuals accessing, understanding, and benefiting from the human genome. The genome, I think, has a massive potential in transforming health care. And what we did is we got a million people genotyped last year. And so people are now a million people running

around going to their doctors and talking about genetics. I think it starts to become disruptive. Do this, fix that. Well, you can't necessarily do this and fix that at this point, but you can come in and say, hey, I'm a carrier for cystic fibrosis. I should be aware of that. So part of what we've had as a mission of the company, we are very much about enabling access. And so in order for you to actually access it, it has to be affordable. And right now, what does it cost? We're at $199, $199. It doesn't require any insurance, anything.

It's online. And what, do you send in some spit or something? Yes, so we give you a little tube. You spit in the tube. I just made that up. It's really true. It's really true. It's really true.

It is really true. It is a saliva-based test. We just send you, we send you a little box, you spit in the tube, we can give you one, you spit in the tube, and then it's easy to understand. So when we've worked with the FDA, we have over 90% comprehension, meaning that people from all over the country get this, they don't know anything about genetics, they're understanding it. And the long-term, the research that we're doing is all about people benefiting from the human genome that they're trying to do good with this but there's always

the bad side the dark side if you will and if it's information right information is power yes control yes so what are the anxieties that we should have? And what are the future anxieties we don't know we actually should have yet? Right, right. The unknown unknowns. Yes, yes. Mr. Bioethicist, you would have thought about this way more than any of us. Yes. Well, there's a few concerns.

So one is there's still genetic discrimination, which is that there is the Genetic Information Non-Discrimination Act that was passed by Congress that applies to health insurance. But life insurance- In other words, if they find something out about you from your genetic profile- You are predisposed to cancer. We are not going to cover you. Exactly right. So that they can't do. But life insurance companies can discriminate. Disability insurance companies can discriminate. Those sons of bitches.

Sons of bitches. Long-term care insurance companies can discriminate. Those sons of bitches. Those sons of bitches. Long-term care insurance companies can discriminate. So if I apply for life insurance today, they could say, well, have you ever had genetic testing done? Let's see the results. Oh, you have this gene that gives you an increased rate of cancer. I'm sorry, we're not going to cover you or we'll triple your rate, et cetera. So you've been failing at your job as bioethicist. et cetera. So you've been failing at your job as bioethicist.

If you could convince Congress to change all this, I'm with you. I'm just saying, I'm just saying we brought you on here as a bio, I thought you were fixing the world, but now, okay. So what you're saying is that law that was passed doesn't cover all aspects of the human, of the health industry it just covers health insurance not life insurance disability insurance long-term care insurance it only covers health insurance because that damn obama and stupid obamacare that we can't be uh uh prejudged and and and discriminated against thanks obama obama's done another good thing, by the way, which I hope we get to, which is he announced last year that we're going to sequence one million Americans.

We'll come back. I think that's a terrific thing. We'll get back to that. Let's get back to that. So one concern is discrimination. The other concern is subtle discrimination. One woman I interviewed, for instance, told me... You don't have to tell us about subtle discrimination. Yeah, believe me, we know.

We just we just skip that. It's like this discrimination. Could you park my car? I don't work here. I do not work here. No, go on. As you know, so one woman I interviewed, for instance, said, you know, I tested for that breast cancer gene test. And I mentioned this to a co-worker, someone I share my cubicle with.

And the next thing I know, everyone in the office was coming up to me saying, how are you? The next thing I knew, when the boss was going to retire, everyone assumed that I would be promoted to fill his spot. The boss was retired, and I was not promoted. I wasn't fired, but I wasn't promoted. And there's sort of a glass ceiling for me now. Sound familiar? And so there's that kind of subtle discrimination that goes on as well. So people may say, well, let's see, we're going to promote someone.

Well, you know, we just found out that she has an increased risk of cancer. You know what? Let's see. Maybe we shouldn't go there. So it's more of a it's more of stimulating an implicit bias towards someone. Exactly right. Than outright discrimination. Yes, correct.

I got you. So that's one concern. Another is that what 23andMe is doing, as I said, there are 3 billion letters. 23andMe is not looking at all 3 billion letters. They're looking at one out of every several hundred thousand letters. They're looking at what are called SNPs, which are single nucleoid polymorphisms. And I should say the ACTG, by the way, actually are nucleotides rather than proteins. They form proteins. That's okay. you the first letter on every three pages. So the first letter of the book's A, three pages letter of the first book's a C, three pages letter of the first letter's a T. Well, you don't know if you're reading the phone book or the dictionary or the Bible or anything else. So what 23andMe

is now doing is just giving you one 100,000th of the information that's there. So there are going to be false positives, as are orange and X anyway. There are going to be false negatives, and there are going to be lots of other problems understanding it. So what hot water did 23andMe get into a few years ago? So several years ago, 23andMe said, we're going to give you medically useful health behavior, health information. From your spit.

From your spit. And what happened, a lot of it, there were false positives, there were false negatives. A lot of it is increased, it didn't give you- To be clear, a false positive is the test shows that you have something, but in fact, you don't have it. Correct. Yes, and a false negative is the test shows you don't have something, but in fact, you do. Yeah, like the test says, you don't have to worry about cancer, and in fact, i should be worrying about cancer because i do have that gene yeah i don't know what that tumor is on my neck then right that type of deal yes right right so um the other problem but what they

said is that this is going to be medically useful information in fact for the vast majority of people it wasn't okay what 20 what the fda said is you know you're you're advertising this is medically useful information. Show that it's medically useful over several years and they couldn't do it. Imagine if your doctor said, you know, I'm going to give you a bunch of information, but it's not really right. Okay. Okay, but genetics is a complicated business. Genetics is complicated.

It's a complicated business. But you would hope the people who are charging you for it understand those complications. Let's get Anne's sense on how complicated it really is. Check it out. Of all the properties we think of being human, what percentage of those are cleanly identified in a genetic sequence? What percent are a tangle of cross-influenced forces? I would say the majority of us is a tangle of cross. A tangle.

So we've done research. We've done the largest research study out there, for instance, on things like handedness, left-handed, right-handed. And it is remarkable how complicated that is. Is it complicated? Just because you haven't really figured it out yet. I mean, the movement of the planets in the night sky was complicated until we figured it out. It took the genius of Isaac Newton to show how simple it was.

Well, I think that we have to establish at some point there will be a world where there's just laws and principles and it becomes very clear and simple how everything works. But at this point in time is incredibly complicated. So handedness is complicated? Everything is complicated. How about height? Height is very complicated. Really? Yes. The thing that's interesting here is all these things are, we're just scratching the

surface of our understanding. And the job I feel like I have to my consumers is conveying the fact that we really don't know a lot yet. So if we're just scratching the surface of this, is it premature for anybody to promise anything to anybody? So it turns out that there are around 50 genetic tests for about 50 diseases that if you have it, it's pretty predictive and we can do something about it. That's a start. That's a start. That's a start.

Okay. And those affect about 1%, 2%, 3% of Americans. Then there are some people, but for 90-something percent of people, we're not going to find things that are very predictive that you can do something about. Well, not yet. Not yet. Okay. So the interesting test as we go forward will be, and we'll discuss this as we come back from commercial.

Once you are armed with this information. Yes. Then what are you going to do with it? Hmm. Okay. What will people, how will people behave in the face of that information knowing knowing their genome perfectly, when StarTalk returns. Welcome back to StarTalk. I'm with my co-host, Chuck Nice.

And our guest, bioethicist, coolest title ever, Dr. Robert Klitzman of Columbia University. And we're featuring my interview with Ann Wojcicki, co-founder and CEO of the personal genetic testing company 23andMe. Not 23andYou, 23andMe. And one of the most famous sort of genetic testing cases typically has to happen to a celebrity to achieve consciousness in society. And it was with regard to Angelina Jolie. She had the breast cancer gene, in fact, had her kids and then went in preemptively with a double mastectomy. And so I was just curious about the case of Angelina Jolie, what role that played in her field, in her industry, and what impact it might have had on the rest of us. So let's open this segment with what Anne says about Angelina Jolie.

Perhaps the most famous person with the breast cancer gene has been Angelina Jolie. Do you foresee the day where women, they get their own information, say, I'm going to go get the double mastectomy? Yes, for sure. This will just be a thing. For sure. Right now, it's lots of people who have the BRC mutation and end up dying, in my opinion, unnecessarily at an early age because they didn't know this. An interesting point here, of course, is that gene mutation that gives breast cancer is the very small percent of all breast cancer.

Sure. So while it's a start, it still doesn't really make a dent in the breast cancer knowledge. A hundred percent. Genetic knowledge. But that's where genetics is complicated. We know what some part, like breast cancer, in 10 years, it will not be seen as breast cancer. But you're going to say you have a cancerous mutation. It's based on these things.

It's manifesting in the breast. It could manifest in the uterus. It could manifest other places in your body. But this is the source of the mutations, and this is how it's evolved. And it's going to be a different sort of treatment. And you're already starting to see that with personalized medicine, where breast cancer tumors that have the Herceptin mutation, the HER2 mutation, get the drug Herceptin. And it ends up working incredibly well because it's targeted towards them. And I think that's a lot of the promise for genetics and personalized medicine. So that's the tuning of the attention given to the one case versus another. Correct.

But it has not trickled into the broad public. And I think that's part of the mission of 23andMe is get the genetic information out there. So we get the information out there. Will people do right by it, do you think? Well, the problem is a lot of people may not understand the information. So you hope that someone could sit down with them and go over it. So with breast it, do you think? Well, the problem is a lot of people may not understand the information, so you hope that someone could sit down with them and go over it. So with breast cancer... Someone like... Well, I hope they read the book. Someone, someone, someone somewhere, I don't know. Someone who listens to this and is interested, and I think we need to increase public understanding

of these issues. But breast cancer, for instance, as you've said, is about, of all breast cancer, about 10% is the genetic kind, the familial kind. And if you have the breast cancer mutation, there's about a 50% chance you may or may not get breast cancer. So you could not have the mutation and get it, or you can have the mutation and not get it. So let's say I find out that- By the way, can I be obnoxious in this moment? Yes. Anytime there's a medical result that says you have a 50% chance of one thing or another, it means you have no freaking clue.

Because if you had a clue, it would be a 0% chance or 100% chance. Yes. You had a clue. I just want to make that clear. Is that correct? It's like the weather person saying saying 50% chance of rain tomorrow. You have no idea. Right.

All right? Because in the future, perfect weather forecasting would be it will rain or it will not rain. Right. And you wouldn't be giving probabilities. You give probabilities when you don't actually have predictive value. So that's the issue. And that's a problem with a lot of most diseases in 23andMe and other genetic testing is that we don't have predictive value yet for most people for most major actionable predictive value right because you want to be

able to make a decision right correct I should say by the way as mentioned there that the the future and the hope and why 23andMe is doing this in part is to sell these results for millions of dollars to drug companies who are trying to figure to target drugs to know based on your genes you should get this drug for a disease, whereas for the same disease, maybe I should get a different drug. And it's thought that that's going to be a patentable kind of information.

Okay, so on the subject of am I my genes or am I my environment? Yes, right. Tell me about how environment plays out. Because I used to host a TV program called Nova Science Now. We did a segment on epigenetics. Yes, correct.

And even though I did the segment and I narrated in it and I spoke with the people active in it, it's still magic to me that this can happen. So can you just tell us what this is? So it used to be thought, and I should say we're learning more about genetics every day. So this is a rapidly evolving field. But it used to be thought that— No pun intended. Ha, ha, ha. That's right.

That's right. Right, right, right. I like that. So it used to be thought that there would be a cancer gene, a fat gene, an alcohol gene, the gay gene, the whatever gene. And we now know that it's much more complicated, that there are many, many, many genes involved with any kind of complex behavior or common disease like that. And the environment is in that equation. The environment is in that equation. So I can give you many examples, but what happens is that genes give you a predilection.

And it's like the weather. How often we know that there's a 50% chance or a 30% chance it may rain, but there could be other stuff that goes on. The wind can blow one way or the other. And we don't quite know. There's that butterfly who could be. There's that butterfly. Over in Japan, they actually created this hurricane over here. Exactly.

That's right. Blame the butterfly. Damn you, butterfly. There was an article in the Journal of Irreproducible Results where this is the fun journal where it's not real science, but it sounds like it's real science. And so someone captured the butterfly that was responsible for Hurricane Andrew back in 1990. That's pretty funny. But I interrupt. Go on.

So what we know is that somehow the environment affects which genes get turned on, when they get turned on, how long they get turned on, things like that. So as well as whether or not a disease will manifest itself. So epigenetics is the study of how environment can help or for good or for worse, alter those genes. Exactly. Turning on genes, turning off genes could be what you eat, other things in the environment. genes turning off genes could be what you eat what other things in the environment and also epicenter in a in an earthquake is the center on the part it's on the ground above where the earthquake took place so epigenetics would be something above the genes exactly right okay so and because we have the genes that are forming protein

yeah but you're you and you know that. No one's going to be impressed. You and you know that. I'll give you an example. So for the book, when I did these interviews for the book, Am I My Genes? The first woman I interviewed with breast cancer said, you know, I always knew I shouldn't have stayed in that awful relationship all those years. I said, why is that? She said, well, that's why breast cancer. I said, but you have the mutation.

She said, ah, yes, but what triggered it was the stress of that awful relationship that's and she may be right okay so you have phenomenal like that the problem is it's often hard to measure that stress this is why we don't quite know but even things like depression for instance are 50 genetic 50 other so you can get depressed you know it's a bad thing could happen to all of us and the person who has genes predisposing for depression could really get depressed. You're just completely susceptible to it. So part of genetic counseling is environmental counseling. Yes. Like if you have a predilection to being depressed and you are a drinker, you are exacerbating the fact that you are going to be depressed.

Right. Gotcha. And genetic counseling also looks at, I think we're about to stop in a sec, but other issues of what would you do with the information? Are you going to have your breasts removed? Are you going to tell your sister you can't stand? Are you going to tell your 17-year-old daughter that she may have this? There are a lot of decisions.

So let's find out what Anne says about what the role of changing your environment plays in this. Check it out. says about what the role of changing your environment plays in this. Check it out. What's inspiring is that you get the opportunity to actually alter your environment. You can't alter your genome, but you have the ability to alter your environment. So the people who are smoking, not all of them go on to develop lung cancer. So is there a genetic reason potentially why some do and some do not? Part of what we're hoping to do, so for instance, there was a story that came out about Target, where they said they predicted the store. And so there is a scandal that they predicted a 16-year-old was pregnant before her father or before she knew. And that

was in part because Target had so much information about her shopping patterns, they were actually able to predict. And so what I think about... Thinking that without her genome. Correct, correct. But part of what I think about in healthcare, which I feel like is a tragedy, is I would love to walk into my doctor and say, hey, Anne, based on all the different behaviors you have, your genome, your environment, what you eat, how you exercise,

you are five years away from having this kind of condition. Then I could actually mention- That would be awesome. That would be awesome. So that's what we're building towards. Well, so tell me about that. Apparently, Target was able to disentangle shopping habits and come up with an accurate conclusion of the health and state of this girl. Based on the girl's online presence. They took everything she did online.

She probably was buying pregnancy tests. Right, right. One week she's buying pregnancy tests. The next week she's looking at the prices of diapers. How much is formula? It's like, hey. The problem is that we all know that we in America.

Wait, didn't she have a three-hour phone call with her boyfriend right after she took the pregnancy test? And then he actually went online and looked up suicide prevention. That's right. There it is. Put it all together. We know that two-thirds of Americans are overweight or obese, for instance. So if we want to improve our health care, we don't need genetic testing to tell most of us we need to watch what we're eating, to exercise more. Those are basic things we all need to do.

And the problem is that a lot of the environmental influences that affect our genes are things we can't control. For instance, we know there are certain markers that have been associated with mental illness which become active if you've been abused. Oh. that have been associated with mental illness, which become active if you've been abused growing up. Well, you can't affect, if you're being abused, you should change your environment anyway, regardless of the fact that it may affect genes. Now you tell me. Or it may be that the diet of your mother when she was pregnant.

Again, so some of those are things we can't control. Which was like alcohol for all of us born in the 50s and 60s. Right. Alcohol. Right. Exactly. Or lead. Lead. Which is now a big thing now with Flint, Michigan. Absolutely. Yeah. Yeah. So let me find out something. The disentanglement of these, because it's not the gene for this, it's the gene for that. Correct. It's way more complicated. How much more data do we need to disentangle it so that we can improve these predictions? The analogy I use is if someone had asked Christopher Columbus in 1500, what'd you find?

He would have said, I found some islands off the coast of India. And it took hundreds of years, 300 years later, plus Lewis and Clark are still traipsing around figuring out what's in the middle of the country. So we're at the beginning of what will be a long adventure. We're learning a lot. But when you think 15 years ago, we didn't know anything about these 3 billion letters. We did not know what they were or how many or how they operated. And so in 15 years, we've learned an enormous amount. In the next 15 years—

Yet we're still in our infancy. We're still in our infancy. Yeah, like born a couple days ago. Right, a couple of days ago. Right, in the big picture. So you have hope then that the future will bring improved predictions. Yes. So that you're not a 50% this or that.

It's 100% this, 0% that. Well, but some, you know, there's going to be a lot of uncertainty. Even the weather. You'd think that whatever the weather is in New York, they'd be able to know because it was whatever the weather was in Philadelphia yesterday. And yet, and sometimes they're accurate, but sometimes they're not. They say 30% chance of rain. So there's going to be chaos theory of uncertainty and, you know, butterfly wings and you ate

happened to be living near, you camp one day near that place where there was lead in the water. Who knows? Can I ask you this, though? Because it sounds to me like this is a big data problem. Because the way you're saying it is, well, with what we know, we have this mass of information, but what we have to be able to do is sift through it. It's massive information, but what we have to be able to do is sift through it. Almost like you guys or the geneticists have to become like Target. You actually have to switch places with Target so that you can know exactly what's going on on our individual basis. That's right.

So this is why President Obama announced that he wants to do the full sequencing, not the SNPs, but the whole 3 billion for 1 million Americans. Okay. And if we start- That would benchmark some data set. Exactly right. And that's the kind of research that we need to really understand all the variation. And if only he hadn't said it, because now half the country doesn't want to do it. So I asked Anne, is there anything we can do to improve the future predictions? Because she's in the business of this, and let's find out where she's taking it.

Is there some machine that you think should be invented that can help you do your work? I'm a big fan of the tricorder. For non-Star Trek fans, this is the device. So I want some kind of device where I can move. It makes a sound and a light flashes, and it completely diagnoses the entire condition of the body. So I want some way of continuously monitoring what's going on in my body.

Some way you can see exactly, like I eat a candy bar, exactly what happens in your body. And so I think with that kind of information, people will be able to change their behaviors. And I think with Fitbit and whatnot, we are just at the beginning of being able to monitor individuals. The tech revolution is changing the landscape of consumer healthcare and actually bringing consumers to the forefront of healthcare and letting them knowing about their body. I think the reality that I realize, like people go to the doctor, let's say once a year. If you're healthy, you go once a year, you have your checkup, but you do things that impact your health every single day. If it's smoking or walking or

eating, et cetera, all those things impact you. Impact it plus or minus. Exactly. So part of it is actually helping people track all that and realizing that your health is not about the episodic visit to your doctor, but it's about what you do every single day. So Robert, do you think doctors will become obsolete in the limit of this technology? No, because there is a lot of complicated data, and it helps to have someone objectively look at it. He works in a hospital that hires doctors, just to make that clear. That's the disclaimer here. Tell me there might be some bias. I think consumer-driven healthcare is extremely important, but patients often say to docs who now say, well, I'm not going to decide for you to decide.

Patients say, well, what would you do if you were me, doc? I don't know what to do with this information. What do we do if there is a 30% chance of this versus a 70% chance of that? Should I have my breast? Like prostate cancer involves so many of these kinds of, you don't know what the goods and the bads of one decision versus another. Right. I mean, so there are people who could fix their own computers. God bless them. You know, some of us need to go to the Apple store and say-

Did you say jobs bless them or God bless them? I didn't hear you right. I thought they're the same thing or some people think they're the same thing. Jobs bless you. So many of us could technically fix our computers, but it helps if someone who knows what they're doing look at the information, particularly when there's conflicting information out there. The other problem is a lot of the data on diseases and treatments is based on people who have no other medical problems. They only have diabetes versus they have diabetes and we're an alcoholic and they're depressed and they have cancer. And so you need judgment.

So when we come back with my interview with Anne, we're going to find out what fears we should all have about genetic testing in the future. StarTalk. Welcome back to StarTalk. I'm with my co-host, Jill Nais. And our guest, bioethicist, Dr. Robert Klitzman of Columbia University, author of Am I My Genes? Levi's? Stupid joke, and you probably get it all the time. We're featuring my interview with Ann Wojcicki and I asked her

just to benchmark this segment, I asked her, what are some of the most common fears and concerns that people have with genetic testing? Let's find out. People usually come and they say two things. One, I don't want to know the day I'm going to die. And I'll say, we don't do that. And then second, they really say that.

I so want to know the day I die because I don't know how to live the day before. That was a Frank Sinatra who said, live every day like it's your last because one day you'll be correct. It's a good saying. The second thing that people fear is the insurance questions. And that's actually been rectified in large part with the Genetic Information Non-Discrimination Act, known as GINA. So you cannot be discriminated against for knowing your genetic information by your employer or by insurance companies. But they already discriminate based on other information. Yes, but they cannot discriminate based on your genome. So if you walked in and said,

I have the BRCA variants for breast cancer, they cannot discriminate based on that information. So yeah, it's one thing to be discriminated against by some institution, but how about people just not wanting to know? And I don't understand that. I want to know everything I can possibly know so I can make an informed decision. But you're an ethicist. You must remember the day. We're kind of the same age here. Remember the day when doctors, it was in their code of interaction with patients to not tell you if they opened you up and found out you were terminally ill. And that's still the case in many countries, in Japan and Spain and Italy.

If that happened to me, I would punch the doctor in the face. Exactly. From the casket. So other countries, they still don't do that. That's right. But take an example with genetics like Huntington's disease, which is a deadly disease that Woody Guthrie, the famous singer-songwriter, had. If I have this mutation, there's a 50% chance that each of my kids will have it. And if you have it, you will die of it. And there's no treatment.

So people like Arlo Guthrie, damn, not a good thing. Right, right, right. So I have to decide, do I want to know that I'm going to die of this thing? And I'm going to die at about the age my parent died, so usually in your 40s or 50s, and there's nothing you can do about it. Now, some people say, well, I can still, one person I interviewed said, you know, even though there's nothing I can do about it medically, if I find I have this, I'm not going to raise four kids in suburbia and have a boring job as an accountant. I'm going to move to Tahiti and be an artist.

So there are personal decisions. Just accountants. I was going to say, one man's Tahiti is another man's accountant. So, you know, there are some people want to know Alzheimer's disease. For instance, we have very good tests that show you have maybe three times the risk of getting Alzheimer's disease. Some people say, well, I want to know, but there's nothing we can do about it. Other people say, no way. I want to just live each day as if it's my last, which is by Seneca, actually, who said I want to. Seneca.

Oh, man, I wanted Frank to have that one. Frank Sinatra. Okay. Live each day as if it's your last because you never know when you're going to write. Yes, yes. Okay. Sorry, Frank. So he was then assassinated, I believe, Seneca.

Bye, Frank Sinatra. Chairman of the Bop. They didn't do it his way. That's right, you crazy. It was not my way. It's all my fault. Yeah, mook. Okay, go ahead.

Anyway, so these are decisions, and the point is that one wants to sit down with a genetic counselor and figure out what information do you want. Do you want to know about the stuff we can't do something about? Do you want to know everything? Do you just want to know the things that are actionable, et cetera? Are people plugged in enough to even answer those questions in an informed way? We need to give people more education. I don't see that happening. I was going to say, well, now the whole thing's crap.

Talking about educating the masses. Okay. I would say that in- That means it'll never happen. That's exactly right. But I would say that in 10, 15 years, when you go to your doctor, he or she will have on the computer your complete genome and can press a button and say, do you want to know if you have the Alzheimer's gene? I can press this button say do you want to know if you have the alzheimer's gene i can press this button do you want to know if you have the breast cancer gene i can press that button but it's important hopefully they'll talk to you

and say you'll say or they'll say this means x or y you know what i want i don't want you to tell me with precision what i'm going to die from because you know my genome. I want you to know my genome and fix the genome so I don't die of it. Exactly. All right? And therein lies the real thing. Is that so wrong to now require that of you? Now, in my interview with Anne, I asked about, there's something about genetic, what is it?

Spurcast-9. What is it? You can, a technology to edit your genes. The genes of embryos. Edit them. There's something wrong, fix it. Fix it. Come out, you got the perfect gene.

Let's find out where. How'd those two black people end up with a white baby? They fixed it. Let's find out where Ann takes us on that topic. Let's click on it. So there's a new technology out called CRISPR-Cas9. It is a very easy gene editing technology. It's a tool.

It's a tool. And so what happened is the first time there was the recombinant DNA, there was a meeting, a famous meeting about the ethics called the Silamar. Back in the 70s or something. Yes, called the Silamar meeting. And there's a new one that's being formed based on this new gene editing technology. And there has to be discussion. So in China, there was, you know, the first embryo that was gene edited. And so people are already starting to do those types of things. But as we understand the genome better, and you can edit better, you have to understand where does society draw the lines. Mr. Bioethicist, where does society draw the lines? I think we need to

be very careful because the problem is we're editing the genes. We could have said that. I need to get better information. Be careful. Thank you, dear Dr. Professor of Bioethics. I'm just impressed how right you are. So we can take an embryo and we can say it has the breast cancer gene. This is hopefully in a few years or this is what people are thinking. We can make sure it doesn't have the breast cancer gene. We want to have blonde hair, blue eyes. We can put in blonde hair, blue eyes, et cetera.

The problem is one, who will have access to this? So with a lot of reproductive IVF kind of technology... Wait, just to be clear, if you can get in the embryo to remove the breast cancer gene, do you do that there and then because there are fewer genes that you have to do that to? Right. So for instance, rather than... Because every one of my cells has that information. Exactly right. So any one of your cells could get too much UV light or something in an airplane or something too much radiation start to go berserk and that's what can less likely for Chuck and me but gone okay a little bit of a sunshade happening okay right UV filter we got we got genetic UV filtering there you go go on'm envious. So in the embryo, though, there is just one big cell at a certain point.

So there you go. Before we go into two cells, four cells. So by changing the one original cell that makes us, when the egg and sperm combine, you can then affect all the genes. The problem is, what if we make a mistake? We find that a gene actually does two things. That gene may lead to some cancer, but it also gives you, helps with intelligence.

Or that gene may give you blonde hair, but it also lowers your something else that you need. Or you take it out and you're born with nipples for eyes. Well, but again, we... Chuck! What?

Chuck? This is where my mind goes. right right sorry well but but the idea is that we don't know what we're playing with here and that's what the danger is is one and the second is down the line who will have access to this so right now uh it costs a lot of money and people pay out of pocket for right now we can screen embryos for different diseases. And wealthy people can now say, I want to screen the breast cancer genes for my embryos so my kids don't get it. And while you're there. And while you're there, poor people can't get this. So in the future, it may be that certain diseases become more diseases of poor people than of wealthy people could afford to screen it out. That's kind of already the case though when you think about it. Healthcare in general. From healthcare in general. Yeah. But the question is, do we want to make it worse? Okay, fair enough.

Anyway, and the other problem is, even now we're trying to develop stem cells from skin cells. They make a lot of cancers. We make mistakes. We're figuring it out. Okay, but all of that is to cure something where there was a problem. Yes, correct. Clearly, if you can cure something that was a problem, you can take something that's not a problem and make it better, right? You can improve something that might have just been average.

We could try. Okay, is that on the docket? So the Chinese are very interested in looking for genes for intelligence. Oh, brother. If we find a gene for intelligence, let's stick it in every embryo we got. Yeah.

Plus all. The problem is there have been millions of dollars spent looking for genes for intelligence. They found one that's the most powerfully predictive one. If you have this gene, Plus all. The problem is there have been millions of dollars spent looking for genes for intelligence. They found one that's the most powerfully predictive one. If you have this gene, you get one extra point on your IQ test. That's it. That's it.

Really? So there's a lot of stuff we don't understand. And it turns you into a jerk. You're a smart jerk that no one... It may. No one will have babies with you. Big nasty a-hole. Right?

So, because that's what, that was the theme in the film Gattaca. Yes, correct. Gattaca wasn't inventing new humans. It was using your entire genome and saying, let's get the best that is within you, match it with the best of who is with your mate. And I had to ask Anne, what was her take on the movie Gattaca? And let's find out. Gattaca is actually in a large part a movie about inspiration of what's possible. Because they essentially took this individual and said, this is your genome.

You can't do these things. And he kind of said, screw you. I'm going to do it anyways. And he showed that there is a balance between gene and environment, and that as much as people can have a genetic predisposition for something, there's potentially things in your environment that you can do to overcome it. And to me, that is why I started this company and why I do this, because I want to know what I can change. So the part about designing babies, that was not a thing to you.

But the fact that the guy in the end who wasn't genetically, that he swam farther, that that was the cool part, fine, that was aam farther, that that was the cool part. Fine, that was a cool part, but they created their own baby. And there was the piano concerto, and the person finishes and he has six fingers on each hand. That's why the music had more notes getting played. So that didn't disturb you? I actually, I tend, I am a half, you know,

glass half full kind of person. So I tend to focus on the positives here. And I think there's a massive positive for the potential of genetics. Okay. Yeah. Just in case people didn't see the movie Gattaca, there was, people were being genetically engineered and one person played the piano and it was beautiful. And he shows up later and he's got six fingers.

Only he can play the particular piece that's being played. Exactly. And so it was an intriguing experiment in what the potentials are of the human genome. And there was one guy who was not so born, not born with such intervention. They're called invalids. Oh, that's right. I forgot that. That's right.

They're invalids or invalids. And at the end, he was able to not be constrained by the expectations of his genotype. And he did things that actually surprised other people. And so she focused on that. But to me, the rest of the movie was still kind of weird. Well, there's a few problems. One is, I'll say, the hubris of prediction. In other words, a notion at birth, oh, this child has a 70% chance of this,

a 60% chance of that, that kind of predictiveness we don't yet have. The notion that there is this gene or that gene that's 100% predictive. Every medieval fairy tale has a soothsayer or the crystal ball that can tell us our future. Wouldn't it be great to have? We don't have that. We need a lot more information. there they'll be for good or bad some of us think for good a lot of variability the other thing is there's it's a discriminatory society where even that little bit of genetic difference could make we're tribal we're tribal the problem is with genetics you can imagine a school saying uh we want the kids who don't have that gene that gives them a little predilection for autism.

And Johnny has that gene. Gene bullies. There you go. Oh, I love it. Oh, I am going to write a whole animated series called Gene Bullies. Gene Bullies. My most recent book actually is called The Ethics Police. Ethics Police. Okay.

Is it out yet? Is it out? It came out a few months ago. A few months ago. I'll look for that. Why didn't you bring that one? I would have held that up. The archenemy of the gene bullies.

We get the whole superhero scenario already figured out. Yeah, so I think like any great discovery, scientific or exploratory, there's always dangers. There's dangers that can kill us, dangers that can – but with wise governance, leadership, guidance, such as what your job is, I don't see why we can't take this as far as we can into the future and improve the species, not in a Nazi eugenics way, but in a sensible way. Get rid of the diseases, improve the quality of people's lives, and I think we're good to go. So these absolutely should be goals it's important that we have equal access so it's not just going to be the super wealthy people who get this but everyone has access uh and uh i think absolutely there are diseases we can get rid of with genetics there are treatments that we could use that are better will help us

better than the current way we give out drugs, et cetera. So I think there's a lot of terrific possibilities, and this is a great opening field. And I'm glad we solved all those problems in this episode of Star Talk. Thank you, Robert Klitzman. Your book, Am I My Jeans? It should be on everybody's shelf. Chuck. Always a pleasure.

Always good to have you. It should be everyone's lap as they read it. That's where Chuck. Always a pleasure. Always good to have you. It should be everyone's lap as they read it. That's where they should be. Chuck, always good to have you here. Always good. I've been your host, your personal astrophysicist, Neil deGrasse Tyson, bidding you, as always, to keep looking up.