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Can you pick your baby’s gender? What about their IQ? And what’s to stop people from editing their babies’ genes to make them glow? Laura and Leah talk to UC Berkeley-trained researcher Mark DeWitt about a controversial case of human genetic engineering. Then Cal alum Steve Hsu discusses the ethical conundrums he encounters at his biotech company where he offers genetic predictions to fertility clinic clients. Finally, Berkeley ethicist Jodi Halpern warns of the threat these innovations pose to human rights.
Show Notes:
- An article in Nature explaining He Jiankui’s gene-editing clinical experiment
- The movie Gattaca
- Francis Collins’s and Jennifer Doudna’s comments on He Jiankui’s experiment
- Jennifer Doudna’s book, A Crack in Creation
- Leah’s diary of a UC Berkeley CRISPR class
This episode was written and hosted by Laura Smith and Leah Worthington and produced by Coby McDonald.
Special thanks to Pat Joseph, Mark DeWitt, Steve Hsu, Brooke Kottmann, and California magazine interns, Steven Rascón, Maddy Weinberg, Boyce Buchanan, and Dylan Svoboda. Art by Michiko Toki and original music by Mogli Maureal.
The Transcript:
LEAH WORTHINGTON: Hey, Laura, I have a little thought-experiment for you. So you’re a mom of a two-year-old, right?
LAURA SMITH: Right ….
LEAH: Okay, now think back to when you were pregnant, and you were like, “Oh, my God. What is this thing that’s growing inside of me, and what if I don’t like it, or what if it doesn’t like me, or what if it’s—”
LAURA: Is that what you think being pregnant is like?
LEAH: Yeah, pretty much. Am I wrong?
LAURA: I think I was a little more concerned about Lucy being healthy than if she was going to hate me one day.
LEAH: Well, that’s actually very relevant. Okay, so back to the thought experiment. What if, during one of your routine check-ups, your doctor gave you the option to check a box that would basically guarantee that your baby would be immune to cancer? Would you do it?
LAURA: Um. Are you kidding me? Next question.
LEAH: Okay, well, what if your doctor gave you the option to guarantee that your baby would have like mensa-level IQ?
LAURA: [reacts] I don’t know. I heard on NPR that child prodigies can have a lot of emotional problems.
LEAH: Okay, fine, so how about just above-average IQ then?
LAURA: Well, I feel like I’d have a lot of questions for the doctor … but for the sake of your thought experiment, yeah sure, I’d check the box.
LEAH: Okay great. So now, what if your doctor said that they could guarantee that your baby would have all the best features from you and PJ—you know like, your eyes, your lean runner’s physique, your nice wavy curls, and PJ’s—well, I don’t actually really know what he looks like, but you get the idea.
LAURA: So basically my baby would be like … an ideal combination of our genes?
LEAH: Yes. Exactly. Would you do it?
LAURA: Well now we’re just getting into sort of murky ethical territory ….
LEAH: You said it.
[THEME MUSIC]
LAURA: This is The Edge, a podcast produced by California magazine and the Cal Alumni Association.
LEAH: Where we talk about stuff at the intersection of cool and scary—and get UC Berkeley experts to help us navigate those … uncharted waters.
LAURA: I’m your host Laura Smith.
LEAH: And I’m your other host, Leah Worthington.
LAURA: Today we’re going to be talking about innovations in genetics—where we are now and what the future might look like.
[MUSIC OUT]
LEAH: We’ll hear from a CRISPR researcher, an entrepreneur, and an ethicist.
LAURA: That sounds like the beginning of a really bad joke.
LEAH: How does it end?
LAURA: Probably with a room full of glowing babies.
[ADVERTISEMENT]
LEAH: So, Laura, I think our story actually begins in 2018, with a little genetics experiment turned international scandal that put all eyes on China. And … Berkeley. But first, have you heard of CRISPR?
LAURA: You mean, like, the drawer where I store my vegetables?
LEAH: Yes, Laura, this episode is all about your crisper drawer. Like, what’s up with that one squishy cucumber way in the back? Are you ever gonna use that?
LAURA: I don’t know; it’s too squishy to eat and not squishy enough to throw away. I need help.
LEAH: There’s no help for what you’ve got.
LAURA: Dammit!
LEAH: But anyway, no, I’m not talking about that crisper. I’m talking about the other CRISPR.
LAURA: Oh you must mean the groundbreaking gene-editing technology discovered right here at Berkeley by Dr. Jennifer Doudna?
LEAH: Yes, Laura, that’s the one.
LAURA: I’ve heard a lot about it. I know it’s a huge deal, but, to be perfectly honest, I have no idea how it works.
LEAH: Well you’re not alone. But all you need to know for now is that CRISPR is basically a fancy, new gene-editing technology. And it basically works by making super targeted cuts in DNA.
LAURA: So it’s like … tiny DNA scissors?
LEAH: Exactly. Plus they’re programmable scissors, which means you can tell them: “Go find this specific spot on a strand of DNA, and make a cut there.” And then once you make the cut, you can pretty much do whatever you want!
LAURA: Okay, I won’t ask how you “tell” these microscopic scissors to do things. But why are we cutting DNA??
LEAH: So cutting the DNA strand just allows scientists to go in and make changes. It’s kind of like putting your cursor at a specific point in a word document so you can add, edit, or delete text—or, in this case, insert or remove genes. And at Berkeley, scientists have already used CRISPR to make cacao plants more resistant to warm, dry weather. You know, so you can keep eating your Snickers bars while the rest of the planet slowly melts.
LAURA: I feel attacked.
LEAH: Sorry, that was rude. But, okay, there are also really cool applications in health and medicine as well. So, for example, CRISPR is being used to treat things like sickle cell anemia and to reverse the effects of blindness. And someday we may even be able to make malaria-free mosquitoes!
LAURA: Okay, but you mentioned a big international scandal.
LEAH: Yes, right. Okay, so, in November of 2018 at a medical conference in Hong Kong, a Chinese scientist named He Jiankui made a shocking announcement.
HE JIANKUI: Two beautiful, little Chinese girls named Lulu and Nana came crying into the world as healthy as any other babies a few weeks ago.
LEAH: He had used CRISPR to genetically modify twin human embryos that, at the time of his announcement, had just been born. They are now two living, breathing, genetically modified baby girls––named Lulu and Nana.
LAURA: Whoa. So what did he do to their genes?
LEAH: Well there’s this gene called CCR5 that codes for a certain protein receptor in white blood cells. And what He did was replace the normal gene with a mutated version, which would stop that protein from being produced and prevent HIV from infecting the cell. So the twins, Lulu and Nana, are now genetically resistant to HIV … or so he says.
LAURA: I mean, that sounds like a good thing …?
LEAH: I know. Sorta like the cancer immunity box you woulda checked for your baby without a second thought. But listen to this …
FRANCIS COLLINS: The announcement by doctor He in China came as a great shock and a surprise and is a truly unfortunate development. This will not be looked at in 20 years as a major advance. It will be looked at as a shining example of how a rogue scientist was capable to hide what he was doing, cross boundaries, and actually cast very negative light on the scientific community’s ability to manage their own affairs. JENNIFER DOUDNA: As someone who’s been involved in the genesis of the CRISPR-Cas9 gene-editing technology, I feel deeply disturbed. It’s inappropriate and something that we had been working hard to avoid.
LAURA: That was Francis Collins, the head of the Human Genome Project and Jennifer Doudna, who discovered CRISPR. And many other people voiced similar feelings. In fact, it seems He Jiankui’s work was almost universally criticized.
LAURA: So clearly He crossed an ethical line … but here’s what I don’t understand: It sounds like lots of people have been using CRISPR to edit genes, and some of them are even experimenting on humans. So what exactly was it about He’s work that got everyone so riled up?
MARK DEWITT: No one had ever genetically modified the human germline before, to my knowledge at least.
LEAH: That’s Mark DeWitt, a project scientist who used to work at Berkeley’s Innovative Genomics Institute. And, like He Jiankui, Mark also studies the use of CRISPR to treat disease—in his case: sickle cell anemia. But there’s a key difference between their work.
MARK: What I do is somatic editing. We are trying to edit muscle cells, lung cells, brain cells, skeletal cells, liver cells, and so on and so forth. Well, those are all called somatic cells, and genetically modifying them to treat diseases, you know, it's something that we've been doing for some time now using CRISPR and other technologies.
LEAH: And an important thing about somatic editing: The changes aren’t passed down to the offspring. But He was working on a different kind of cells, doing a different kind of gene editing … called germline editing.
MARK: Embryos, those are called germline cells, as in they grow up and become people, and then those people have kids that also have those mutations. And that is categorically different, I think, from an ethical perspective from somatic editing.
LEAH: And one of the most intriguing parts of the story is that He actually conferred with a couple of Berkeley scientists before conducting his experiment, including both Jennifer Doudna and Mark Dewitt. So, here’s what happened … In 2016, He took a trip to the Bay Area, and he reached out to Mark to talk shop about CRISPR research methods. They met for coffee and stayed in touch over the next year. And Mark did know that He was interested in human embryo editing—but not the extent of his research. And then, a few months later in 2017, Mark received an email from He that said he’d gotten approval for—and was beginning—clinical trials in human embryo editing. And Mark was like, “Don’t do it! The research isn’t ready! It’s too risky!”
LAURA: But he did it anyway??
LEAH: He sure did.
[MUSIC]
LAURA: I guess what I’m curious about is—what about making babies resistant to HIV is so risky?
LEAH: Well, the problem is that making gene edits isn’t really that simple … or fully understood.
MARK: In the context of HIV, we don't have enough patients that have that mutation to know whether or not there's other risks that you could incur by having that mutation. You might be resistant to HIV, but you might also be more susceptible to other diseases. Then there's another question of so-called off-target mutations, which is that when you do gene editing, there is a low but real possibility that you will target additional sites elsewhere in the genome that have a similar sequence to the one that you're trying to target.
LAURA: So he’s saying that He made a genetic modification that could have unknowable effects on the health of these two babies, Lulu and Nana?
LEAH: Well, and not just Lulu and Nana, but all of their offspring too. And all of their descendants and on and on for the rest of time. So, at this point we’re pretty much waiting to see how these little girls turn out—and whether they have any unintended health effects.
MARK: I'd be most concerned about the health of the babies themselves. Of anybody involved here, all the patients, and the moms, but especially the kids. Because those are the ones whose embryos went through this process this novel in vitro fertilization gene-editing genotyping process.
LAURA: So, it seems like, even if He had good intentions, as he claims to, the technology just wasn’t ready to be used in this really radical way.
LEAH: Exactly! And that’s what everyone had been so afraid of. Even Jennifer Doudna wrote in her 2017 book called A Crack in Creation that she was worried someone would attempt germline editing too soon. She actually had a whole nightmare about it.
LAURA: So Leah, what happened to He?
LEAH: Well, what he did was expressly illegal under Chinese law, so last year he was convicted of conducting illegal medical practices and sent to jail for three years.
LAURA: And … what happened to the babies?
LEAH: Apparently they’re being, quote, “medically supervised.” But that’s pretty much all we know.
LAURA: Oy. Okay, so He somehow managed to get around national regulations and use CRISPR to edit Lulu and Nana’s germline. So then … what’s stopping anyone else? Have regulations gotten any tighter since then?
MARK: Yeah, that's a good question. I mean, I think that there's been discussion of having more guidelines relating to how scientists conduct themselves.
MARK: What I can tell you is, if you want to do germline editing in the United States, you have to write up exactly what you want to do and why, and hand it over to the FDA, and they will approve it or not approve it. I am not a psychic. But I'm going to guess that they're not going to approve it. Pretty much no matter what. If you do it without their approval. That's it. That's illegal.
[MUSIC TRANSITION]
MARK: Just because you're trying to do something that sounds in principle good doesn't mean that you should do it.
[MUSIC OUT]
LAURA: So, speaking of things that sound good in principle, I want to know if I can edit my baby to glow green. You know, like with that gene for bioluminescence.
LEAH: Laura, stop trying to turn Lucy into a jellyfish.
LAURA: It would be so cool.
LEAH: Well, to paraphrase Mark, just because something sounds cool doesn’t mean you should do it.
LAURA: Okay, fine, but glowing babies aside, there must be some cool, not-quite-as-dangerous stuff that people are doing with genetics, right?
LEAH: Not-quite-as-dangerous might be a little bit subjective, but we should definitely talk a little about what’s actually happening right now in the world of genetic innovation. Which leads us to our next guest ….
STEVE HSU: It's Steve, and the last name is easy. It's like, it's “shoe,” like tennis shoe or Nike shoe. It's just the shoe that you wear on your foot.
LAURA: Steve is the Senior Vice President for Research and Innovation at Michigan State University and a professor of theoretical physics.
STEVE: My Ph.D. from the University of California at Berkeley––Go Bears––is in theoretical physics.
LAURA: Steve was also early to recognize the potential of machine learning in genetic testing and prediction, and, so, years later he became a self-taught geneticist. He runs a company called Genomic Prediction, and recently they’ve been in the news for something pretty controversial. But before we get to the controversial part … I’ll let Steve explain to you what they do.
STEVE: So, typical situation would be two parents have gone to the IVF clinic, and they have six fertilized embryos. And, how do they choose which of the—say the one or two of the six embryos that they really want to use that will become, perhaps, their child. And the existing standard of care is that an embryologist looks at the embryos, which maybe have developed up to like 50 or 100 cells, and says, "Oh, this one looks really good. Use that one!" STEVE: And typically what they're looking for most commonly is something called aneuploidy, which means that the embryo has an abnormal chromosome count. So, for example, it could lead to Down syndrome. Similarly, a little bit more sophisticated and a little bit less common is to look for specific single-gene mutations, like Tay-Sachs or cystic fibrosis. STEVE: The alternative is to take a couple of cells from the embryo, amplify the DNA from those cells, and—by analyzing a lot of data and using AI and machine learning—we build predictors that can just look at that genetic information and make a prediction about the individual.
LAURA: So basically a client comes to the IVF clinic, and the clinic physician sends a sample cell of the embryos to Steve’s people at Genomic Prediction. Then, using a proprietary algorithm, they analyze millions of genes to make a prediction about the health outcomes of each embryo.
STEVE: And then from that information, the parents can make a more informed decision as to which of the embryos to use.
STEVE: Another way that we'd like to think about it is: Imagine that there are six parallel universes. One in which embryo one became your child, another where embryo two became your child, another—okay, so six parallel universes. Our technology just lets you peek into those six universes and decide which one you want to step into.
LAURA: What are some of the diseases or things that you're able to screen for—I guess—or predict probability for?
STEVE: Type 1 diabetes, type 2 diabetes, breast cancer, testicular cancer, prostate cancer, hypothyroidism, hypertension, coronary artery disease. So it's a very long list.
LEAH: But they’re not just testing for the presence or absence of a single trait. Like: “This embryo does or does not have the gene for sickle cell anemia.” Instead, they calculate what’s called the polygenic risk score, which is the likelihood that an embryo will develop a certain disease, like breast cancer, based on a whole bunch of different genes. And the reason that’s important is because most diseases aren’t determined by only one gene.
LAURA: We should mention that, right now, Steve is talking specifically about disease prediction, which isn’t really all that new.
STEVE: So the only difference now is that there's a finer resolution in terms of which diseases are covered by the the genomic analysis and much more detailed probabilistic predictions than were possible in the past.
LAURA: But remember I said that he’s been in the news lately for something a little … controversial? Well, the controversy isn’t what they’re currently doing with the technology but what they COULD do with it.
STEVE: So we can tell, for example, who has blue eyes, who has red hair, who will be tall, who will be short. We even have, the BMI predictor is not particularly good, but you could see people who are outliers for BMI.
LEAH: Steve said that when it comes to things like hair or eye color, their predictors are nearly 100 percent accurate. He also said that they could predict height within about plus or minus two inches.
LAURA: But we should add that this is something Mark and other scientists have doubts about—that Steve’s predictions about features like height are as accurate as he claims.
STEVE: But we actually do not deliver those; we only deliver information in the report which is relevant to an actual disease condition because we think there's an ethical issue there when it comes to cosmetic traits.
LEAH: Okay, so, obviously it’s ethically dubious to give people the power to design runway-model babies. But some things are murkier. Like … take intelligence, for example ….
STEVE: So there are standard tests of cognitive ability. They're generally called IQ tests, but psychologists have more sophisticated names for them. And so imagine you have say two brothers born in the same family, and the parents love both the brothers, and they had good nutrition, and they both went to the same schools, but one of them turns out to score much higher on these tests than the other kid. STEVE: Now, so then one can ask, can we predict from the DNA which of the two kids is the one that really excels in school and which is the one that really has trouble in school? It turns out we can, at some level predict, only crudely, not nearly as well as we can predict for height, not nearly as well as we can predict for some disease conditions, but we can actually make some predictions. So the only part of our service at Genomic Prediction, which is at all related to cognitive ability, is if we see in the genotype that an embryo is a very strong negative outlier. That information could be included in the report.
LEAH: So, basically, Steve claims that they can determine if an embryo is at a higher risk of intellectual disability, meaning that they’ll have an IQ of 75 or lower.
STEVE: So think of the smartest kid in your high school class and the kid who struggled the most in school in your high school class—there is a pretty significant difference in life outcomes for those types of people. And, so, most mothers would probably be pretty concerned about having a kid who's going to struggle like that.
LAURA: I’m feeling sort of uncomfortable with this gene-intelligence connection.
LEAH: Yeah, I know, me too. According to Steve, their intelligence tests are about as accurate at predicting IQ as SATs are at predicting college GPAs. Which is to say, slightly better than a coin toss but nowhere near perfect. Plus, it seems a little questionable to say that embryos with lower-predicted IQs are going to become kids with worse life outcomes …?
LAURA: Right. I think there are a whole host of complicated issues here, perhaps chief of which is the fact that quality of life isn’t measured on a spectrum of IQ.
LEAH: Yeah, exactly. And since this is such a complicated issue, we asked Steve if he has ever given a family this information.
STEVE: We have not because we've just never encountered an embryo that actually triggers that warning.
STEVE: But put yourself in our shoes. So imagine, like, we're mainly doing this to help. Like, for example, family comes to us. And let's imagine we find some negative—suppose they were mainly focused on breast cancer, but we find some other thing, which is, you know, potentially concerning. Should we keep that to ourselves, or should we tell the physician that this is what the algorithms say? And we tell the physician. So it's up to the physician then to advise the parents on what they're going to do with the embryo. We don't actually directly advise the parents. But we feel like if I didn't let them know, there would also be some ethical problems with that, like, I have some information that maybe the parents really care about or the doctor thinks is important. Could I really hold it back?
LEAH: Do you see a future in which you give more than just more information than just this, you know, embryo four has a higher likelihood to have a really low IQ. And you take it one step further and say embryo five has a higher likelihood of having a high IQ, and embryo one has a higher likelihood of being tall, you know?
STEVE: The place where we feel comfortable is only warning people about negative risks that pretty much everybody agrees with are negative.
STEVE: We've already been, like, attacked for, you know, just because we do this one thing, having to do with cognitive ability, we've already been attacked. It's not good, just even from purely even if you agreed with it ethically, from purely business standpoint. It's not a great place to be because it just it just excites controversy.
[MUSIC]
LEAH: So that’s something you would never do?
STEVE: I don't think we will. You know, it's hard, it's hard to predict, like, I won't control the company at some point. You know, like, who knows, maybe the company will go public, or it'll be acquired by some Big Pharma company or who knows. What they will do with the technology, I cannot say, but I don’t see it in the foreseeable future, for sure.
LAURA: Do you see it for other people? Like other companies?
STEVE: So when we talk to IVF clinics in Asia, they all want the most aggressive prediction possible. And what they say is they say our job is to give these parents the best baby they can possibly have. That's full stop. That's our job. So why would you not tell us, you know, which one is going to be maybe the smartest or the tallest or whatever?
STEVE: Am I going to judge them? Because their culture is just as valid as my culture. Like, I'm not going to say like, "Oh, like 99.9 percent of Japanese families and doctors actually want them to do this a different way." Who am I to tell them that they can't practice medicine that way?
LEAH: With these predictions, of course, they're all based on datasets that you have. I'm wondering whether these datasets are representative.
STEVE: If I train on people have entirely European heritage, but then I try to use it on people in Beijing, or I try to use it on people in Nigeria, there is a significant fall off in prediction.
LEAH: Do you have other datasets that you use for people of non-European descent? Or are you just not getting clients of non-European descent?
STEVE: So, at the moment if we, for example, have an African American couple come in, we would have to tell them, we don't actually have any good predictors that we can use for them. And that's just the current situation.
LAURA: It seems like if I could find out that, you know, my future child has a potentially deadly or, like, terrible disease, that's undeniably a benefit to me. And it seems like the challenging thing is then, if you follow this out in the long term, and this becomes like the standard practice, and, you know, all people who are having IVF, who are presumably people of means, maybe also a lot of like, people of European descent, I guess my fear is that we would create a world that kind of has, you know, a disproportionate amount of people who are getting like the healthy genes, and then everyone else has to take like a roll of the dice. Is that something that you're concerned about?
STEVE: Yes, we're very concerned about that. A big thrust of our research is to A) try to gather more diverse datasets to train the predictors on and also to develop techniques where we have a predictor that's trained on one population and to try to figure out how to modify it so that it works better in another population. The second issue is, you know, the basic issue of economic inequality of, like, in America, you can only do IVF if you can afford it.
LAURA: How much does it cost?
STEVE: You know, it really varies because in the U.S. it's probably something at least in the order of $10,000 per cycle.
LEAH: How much does your service cost?
STEVE: Our service is only a small fraction of the overall cost of the IVF. So generally genetic testing of embryos you're talking about on the order of a few hundred dollars per embryo. But the reality is, you know, in the U.S. actually we could even take another step back and say like some people don't even have basic health care.
STEVE: We live in a society that tolerates vast inequality. That is just what it is. And this is, in a way, just another consequence of that. Any new technology that we develop, initially, typically, it's not cheap. And so like it just exacerbates inequality. Like if I have brain implants that make you smarter, and only rich people can afford brain implants when they're first invented, well, yeah, it increases inequality because now not only are they richer, they've actually got these brain implants that nobody else has, right? So that's a standard pattern. I think it’s very difficult to avoid that.
LEAH: How far do you think we are from doing more widespread embryo or baby selection for things like disease, and then also for things like cosmetic qualities?
STEVE: We're pretty sure that if we had access to decent photographs, of say, a million people, and we had their genomes, we could build a genomic predictor for each of those 100 parameters, and we would be able to go from DNA to face. And you can imagine a situation where I do this with six embryos. So the mom and dad are deciding which of these six embryos are we going to use? And the algorithm pops up six faces. And so this is what they'll look like when they're 1, when they're 6, when they're 16, when they're 36. And which one do you want?
STEVE: This is not science fiction, actually, this is technology, which is very close to being possible. It's actually really just a matter of the availability of data.
LEAH: Something that makes me really nervous about that is, like, what if I grow up and, you know, when I'm 15 years old, I find out that my parents did this—that they made a decision to choose my face over five other faces. Then, they have some sort of weird responsibility not just for bringing me into the world but bringing me into the world in a really particular way.
STEVE: You know, I think thoughtful people can disagree about what is ethically permissible or what is not ethically permissible. But, certainly, you know, it's worth thinking through all these things because the technologies are going to exist to do these things.
LAURA: Steve made a really good point, which is essentially that: If the technology exists, we will use it. Which is exactly what He Jiankui did. So, to a large extent, the future of humanity relies on our ability to regulate what we’ve already created.
LEAH: Right, and the problem is that the current regulations for genetic engineering are lagging way behind the technology. Especially when it comes to modifying germ cells like embryos. Which is why, since He’s announcement, there has been a big, really frantic push to slow down the advancement of germline editing. Last year the World Health Organization put together a panel of experts to outline some international standards for editing of the human genome. And, meanwhile, a group of CRISPR researchers called for a five-year moratorium on editing DNA in sperm, eggs, and embryos—basically to give policymakers some more time to rewrite the regulations before something else crazy happens.
LAURA: And just last month, an international commission published one of the most extensive reports on germline editing yet. The TLDR; is that, like Mark told He, gene-editing technologies aren’t ready for use in human embryos. But, since they might someday be, the commission called for the creation of a global scientific body that would essentially review proposals to do heritable genome editing and decide whether or not to allow it. The commission also said that germline editing should be only used for serious conditions determined by a single gene, like Tay-Sachs disease or sickle cell anemia. And only when there are no other options available.
LEAH: But for now, while there are international advisory groups and committees that advise on these issues, it’s sort of like the Wild West with each country creating its own set of rules. And, in fact, right now, there’s a scientist in Russia who is waiting on approval from the Russian government to do basically exactly what He did—which is implant embryos that have been edited for HIV resistance in a woman. And a lot of concerned scientists, like the president of the National Academy of Medicine, have basically said that we’re powerless to stop it.
LAURA: And, not only do rules differ country to country, but a lot of information about how to do this work is totally accessible to the general public. Like, Leah, didn’t you take a class on CRISPR right here at Berkeley?
LEAH: I sure did. And, since a lot of Steve’s algorithms are open source, I could theoretically take them and use them in my basement laboratory along with all of my CRISPR tools. If I had a basement, or a lab, or CRISPR tools … or knew how to code …. So, anyway Laura, as this technology becomes increasingly available, you know, say, in the next five years as you’re contemplating kid No. 2, what will you do?
LAURA: It’s a really scary thought. My first reaction is that I don’t want the burden of choosing my kid’s face, or other cosmetic qualities—or even some non-cosmetic qualities, like intelligence. I don’t think that’s a power I should have, and I just don’t know enough—I don’t know if anyone knows enough—about what makes a flourishing human being. Not to mention how these technologies might shape society. But then there’s this other really pernicious thought, and I’m not proud of it, that has more to do with the traits that correlate with academic success. Which is: What if everyone else is doing this, and I’m not, and my kid falls behind or suffers for some reason, and I could have prevented it? I think it’s a really common thought in parenting: What can I control to give my kid a leg up in the world, or at least not a leg down? But, of course, this juts up against another feeling, which is: What’s good for society as a whole? And what kind of society do I want my kid to live in?
LEAH: I think that’s a really important point—this question of the pressures that parents feel. Right now, these kinds of services aren’t really the norm, but we’re in the early stages of this becoming normalized. And you can only imagine that parental pressure building up.
LAURA: And I can tell you from firsthand experience that much of the world runs on parental anxiety.
LEAH: Oh, I believe it. Well, this seems like a good time to bring in our final guest who’s going to talk to us about what these new technologies mean for the future of society.
LAURA: Oh, right, so this is the part of the joke where the ethicist walks into the bar.
[MUSIC]
JODI HALPERN: I'm Jodi Halpern. I am a UC Berkeley professor of bioethics and medical humanities, co-founder of the Berkeley group on the ethics and regulation of innovative technologies. I'm a psychiatrist with a Ph.D. in philosophy of mind. And that's probably plenty.
LEAH: We wanted to know whether, from an ethicist’s point of view, there could ever be a case for making genetic choices about our babies. And right away, Jodi was like: This isn’t just about your individual babies and their health outcomes. It’s about human rights—for all of us.
JODI: There's two perpendicular ethical traditions. One of them, which is the oldest tradition in ethics, really has to do with human rights and the duties we have to respect each other's rights. The other tradition, which is sort of a 19th century invention, along with eugenics and pseudoscience, and good fields like public health, is utilitarianism. And that field thinks that we can engineer outcomes and orchestrate societal health outcomes, but that how we get there, that the ends justifies the means. JODI: And the reason I teach is because I think the tradition of human rights and the duties we have to respect each other, that it’s not just about maximizing some aggregate benefit, like decreased suffering. Even though that's important, we still have to think about the means we take to any goal.
LAURA: And Jodi explained that editing or selecting certain genes to reduce disease or disability is an example of a potentially dangerous means.
JODI: Because it's basically saying that there are some conditions that people live in that make their lives less worth living or less high quality, that maybe those lives shouldn't be lived that way. So it raises enormous stakes about society making decisions together about how to shape human conditions for health and disease.
LEAH: And this is a real thing that people have already expressed concern about. Jodi explained that, among people with disabilities who have spoken out about feeling at risk if germline gene editing were to become the norm, are people in the Deaf community. What happens to people in that community if we start allowing everyone to edit deafness out of the gene pool? What if some parents don’t want to? And, you know, who gets to decide if deafness is a disability or just a characteristic?
LAURA: And to push things a bit further, I’m going to give a really disturbing and extreme example of how this might go wrong. So, right now, it’s more dangerous to be Black in America than it is to be white, right? So, what if we started allowing parents to genetically lighten the skin of their children to quote unquote “decrease suffering,” as Jodi put it?
JODI: To start editing skin color would be such a noxious means, it would be so devaluing of people from different backgrounds. It would just perpetrate the most dangerous, noxious stereotypes in society that people are literally dying because of right now. We're speaking in June 2020, where the Black Lives Matter movement is mobilizing all of us to be so aware of what people have suffered because of being perceived as having Black skin or Black identities, where we even know that race is a social construction. So the idea that we would start taking skin type into something we would genetically edit ... to me it would feed those most noxious traditions and violate the rights of everyone to be treated with due regard and equal respect.
JODI: You know, maybe giving, in certain societies, every woman, you know, enormous breasts would make them be better treated by the men, and they'd have better health outcomes. And I don't think that from a feminist perspective, people would say, that's what we should do. I mean, it just seems like a terrible, slippery slope to think about those kind of things.
LEAH: Jodi explained that this issue is not only an issue of human rights but also an issue of what norms we as a society choose to perpetuate, and what we expect parents to do or not do.
JODI: You're creating parental expectations that they should shape what the persons that do get born and that they raise—they should shape them according to the parents' own wishes. And, to me, there's—that's a disturbing notion of parents’ relationships with their children. It's an ethically disturbing notion of what parents owe their children.
LAURA: And also a rights issue to people who have the condition that you're editing out for.
JODI: Yes. For them, it can definitely be a human rights issue. They could become stigmatized. They could become ostracized. They could lose their health and social support because they should have been edited. I mean, there's all kinds of rights violations that could occur with people in disability communities.
LAURA: Is there any germline editing that is being debated that has more merit than maybe breast size or something like that?
JODI: Well, I mean, it's not so much whether it has merit. The question is, does it have overriding merit given the harms and rights violation it involves? So the case that made the National Academy of Sciences and medicine consider germline gene editing, is if you have two parents who both carry Huntington's disease, and so if they had a biologic child, they would have Huntington's disease. And they saw that as a potential case for a germline gene edit.
JODI: But when you suggest that you can eliminate a disability from a germline, and people mistakenly lump together people with very different kinds of disabilities, there's even a new sort of idea that parents are obligated to improve or even maximize the health of their future children. It becomes like a new societal ought, and that could also lead to parents and families of children with severe or serious disabilities being stigmatized but even ultimately getting less societal assistance. Because it could be perceived that they could have sought germline gene edits.
LEAH: Oh, my god. Now I’m definitely never having children. I do not need more ways to screw up their lives … But you’re a mom, what do you think?
LAURA: Oh, I see versions of this all the time. I mean, not with gene editing, but this idea of a societal “ought” really resonated with me. Like, oh, your kid isn’t in a Mandarin immersion program? Or doesn’t have that toy that fosters xyz learning? There’s this feeling that everything needs to be maximized, and, if you don’t know about certain quote unquote “opportunities” well, your kid is going to fall behind.
LEAH: This is really making me think of the movie Gattaca. It takes place in a future where parents have the ability to make very precise gene selections, so, of course, there’s all this pressure to have the healthiest, most attractive babies. I’m going to play you a little clip from the movie so you know what I’m talking about …
[SCENE FROM GATTACA]
DOCTOR: I've taken the liberty of eradicating any potentially prejudicial conditions: premature baldness, myopia, alcoholism and addictive susceptibility, propensity for violence, obesity, etc.
MOTHER: We didn't want—I mean, diseases, yes, but uh …
FATHER: Right. We were just wondering if, if it's good to just leave a few things to chance?
DOCTOR: You want to give your child the best possible start. Believe me, we have enough imperfection built in already. Your child doesn't need any additional burdens. And, keep in mind, this child is still you, simply the best of you. You could conceive naturally 1,000 times and never get such a result.
LAURA: Oh, wow. Yeah, that feels a lot like the world we’re headed toward … or maybe are already in …?
LEAH: I know. And, you know, this is Hollywood, so of course they take things to the extreme and—spoiler alert!—in the movie those with the quote unquote “inferior genes” are actually barred from certain parts of society, like elite careers or certain social clubs.
LAURA: So Gattaca sounds like an extreme example of devaluing people, but Jodi is also concerned with less extreme possible scenarios: She argues in her work that you don’t have to be actively discriminated against to have your rights violated and for a practice to be unjustifiable. She mentioned that in addition to threats to individual rights there are implications for distributive justice, meaning how we distribute resources.
JODI: Where we have a technology that really improves the long-term health and well-being of a community, we need to make sure it's available to those who are vulnerable—regardless of ability to pay—so that we don't wind up with alpha-beta over serious diseases. And where it's things like, quote unquote, “enhancements,” where people get these social advantages and you're not even treating disease, I don't think we should have the propagation of the technology.
LAURA: My concern is that it's developing more quickly than anyone can regulate it or control it.
JODI: The question of whether you can have airtight cooperation with standards. I'm positive you can't. We know that already. So I believe that, it's really incredibly interesting how important ethics is even if it's not about being the ethics police, which has never interested me frankly. I'm really interested in people internalizing norms that by and large, push society forward towards progress in the social sense.
LAURA: For Jodi, “normative progress,” as she called it would include acceptance of differences and full inclusion of people with disabilities.
JODI: That's what I'm hoping with justice in our society, with health disparities related to the COVID crisis, with the Black Lives Matter movement, with everything going on in this country. When you give people the sense that children are only worthwhile if they're taller or their skin color is lighter, you're actually doing the opposite of what I'm trying to do, which is you're perpetuating noxious norms.
LEAH: Who is ultimately going to be making these decisions? Is it going to be groups of ethicists and policy makers?
JODI: People tend to want to say, is the decision going to be the experts? Should it be the scientists? Should it be the ethics experts? And in this time period, where we are very concerned with real representation and democratic deliberation both of those things are important in my view. I think we need scientific expers, we need ethics experts, I think we absolutely need inclusive democratic processes to hear from all different parts of society. However, I think both of those things are necessary but not sufficient. What happens with both of those things is the most vulnerable voices still get suppressed.
JODI: So that's why I have strongly advocated for human-rights impact assessment and for a pluralistic body of representatives to be involved: experts, people with the disease, people without the disease, scientists, ethicists, policymakers. But I think that they should use a tool that's public, transparent, and heir findings can be really held to a rigorous standard. And I suggest a human-rights impact assessment as a way to make those kinds of decisions.
[MUSIC]
LEAH: Alright, so here’s where I think we stand: We’ve got the first two, hopefully healthy, babies with germline edits growing up somewhere in China, and Dr. He is in prison for violating Chinese law on experimental gene editing. Meanwhile there are researchers like Steve doing ostensibly good work to help parents have healthier babies by screening for disease—though there’s always the possibility that, in the wrong hands, his powerful prediction technology could be used to move us closer to a dystopian, designer baby, Gattaca-flavored future … something like that.
LAURA: So then, back to my original question …
LEAH: Can you make your baby glow?
LAURA: Yes.
LEAH: No.
LAURA: No?
LEAH: Yes?
LAURA: Maybe?
LEAH: I mean, legally speaking, probably not. But technologically speaking, I guess it wouldn’t be impossible. We might have the ability to do it already.
LAURA: Wow. And, probably, if lots of people were doing things like this, we’d have bigger problems than glowing babies.
LEAH: Unless it turns out that fluorescence correlates with higher IQ or something. Then, you know, all the rich people will want it.
LAURA: Wow, a fluorescent 1 percent. That’s all this world needs. Should we bring in Marco with the last word? Since, of all of us, he was most recently a baby?
LEAH: Yes, let’s hand it over to our non-genetically edited neighborhood kid.
MARCO: I feel like gene editing babies—I think it's unfair to the baby and to the people who, like, couldn't be gene edited. MARCO: Say you were born, like, really skinny and, like, really short and, like, just wimpy. And then there's this, like, HULK baby. You're just going to feel bad about yourself.
[MUSIC]
LAURA: This The Edge, brought to you by California magazine and the Cal Alumni Association. I’m Laura Smith.
LEAH: And I’m Leah Worthington.
LAURA: This episode was produced by Coby McDonald, with support from Pat Joseph. Special thanks to Mark DeWitt, Steve Hsu, Jodi Halpern, Brooke Kottmann, and California magazine interns, Maddy Weinberg and Steven Rascón. Original music by Mogli Maureal.
[SCENE FROM GATTACA] DOCTOR: And keep in mind, this child is still you, simply the best of you.
