Nita Farahany Interview on Human Germline Modification: Defining A Road Forward

The topic of heritable human genetic modification has been heating up recently. Prominent scientists, ethicists, and legal scholars have being weighing in, and there is a range of attitudes. Some favor a complete, moratorium including even lab work, while on the other end of the spectrum there are those who have a more liberal perspective. Many of us fall in the middle somewhere.

I have been interested in having conversations with people with diverse views and posting them on this blog. You can see past interviews with Jennifer Doudna here and George Church here.

Duke Professor Nita Farahany, J.D., Ph.D has been one of the more prominent, public proponents of some forms of human germline modification. She has been in a number of debates arguing on the “pro-human modification side”, including just to cite one debate this one where she argued against prohibitions on genetically modified babies. I also recommend watching the video below where she debated Marcy Darnovsky of CG&S  and advocated for allowing human genetic modification. The way the debate framed it was, “Should we design our babies?” and Farahany argued the “yes” side. She has mainly focused on three-person IVF rather than nuclear editing such as by CRISPR-Cas9, but the latter has become increasingly feasible on a technical level and important as an area of discussion.

I reached out to Professor Farahany, who is also a member of the prestigious Presidential Commission for the Study of Bioethical Issues, to have a conversation about human germline modification. I found many of her answers to be intriguing and surprising.

PK: You’ve been characterized in various debates, to put it simply, as being on the side arguing the “pro-designer baby” case. Is that correct? And why?

NF: No. I’m in favor of mitochondrial transfer, but not nuclear gene editing at this time. We haven’t reached a point in the technology where nuclear gene editing could be done with an expectation of safety and efficacy. Still, the bright line between somatic and germline modification – it’s not tenable. Could I be convinced on nuclear modification in the future if there’s more information? Possibly. I’m not opposed to germline modification ever happening.

PK: What has made you more supportive of mitochondrial transfer compared to nuclear gene editing?

NF: The UK has taken the appropriate approach on mitochondrial transfer. They held meetings and hearings. They involved the public. The HFEA provided information. They engaged the Nuffield Bioethics Commission. Their process was thoughtful and considered. They made the right choice at the end of the day. I’d like us (in the U.S.) to follow that lead. We need to reconsider. I’m concerned that the alternative is people facing mitochondrial disorders turning to risky medical tourism.

PK: What specifically makes you feel differently about mitochondrial transfer versus CRISPR of nuclear genes?

NF: CRISPR is newer. And editing of nuclear genes raises greater ethical concerns. That being said, I don’t draw a bright line around it. The difference is where the technology is today. A place I could imagine nuclear gene editing being appropriate is if we know that there is a particular single polymorphism that creates an unhealthy condition and that with CRISPR technology we could replace the unhealthy portion with a healthy portion. We aren’t introducing any new traits in that case. I could imagine that could be a place for gene editing and if we also had adequate safety and efficacy information, I could possibly support that.

PK: Is mitochondrial transfer a form of heritable genetic modification? Some have argued it isn’t.

NF: Yes, it is germline genetic modification. The controversy has had less to do with the technology than to crossing the line to germline modification.

PK: A few months ago the first human embryo editing paper was published. One can fault the specific form of CRISPR methods they used, but they still found numerous problems such as off-target effects and mosaicism. What was your reaction to that paper?

NF: I’m unsurprised about the effects and that’s part of why it is too soon. We need to really understand the technology better. I’m in favor of using it in animal models. Then we could consider human work later based on what is found.

PK: Does the non-viable embryo aspect of that study make it less problematic?

NF: I wouldn’t be doing human embryo work at all today even in vitro in the lab. What would be reason to use human? There hasn’t been adequate democrat deliberation. Making the leap to humans is problematic. At this point we need to focus on animal studies. Even in nonviable human embryos there are ethical concerns.

PK: Let’s say we get to a point where we know CRISPR is safe in humans. Even if it is safe and effective, are there still other ethical issues?

NF: I personally would probably be in favor of it, but my opinion is not the basis of deciding as a whole whether we as a society do it. It’s already happening elsewhere. It’s figuring out how to enable progress.

PK: Some have raised the issue that the future genetically modified children cannot consent to being edited. Is that a valid issue?

NF: We can’t consent future children to be born to begin with. Children also don’t consent to parenting strategies. The idea that children cannot consent to gene editing is a bit of a red herring. It’s less about consent and more about the impact on that child and on the human population more generally.

PK: What about using genetics technology for prediction of offspring traits? I read that you and your husband had used the 23andMe genetic predictive tool for future offspring. What was that experience like?

NF: We thought it was interesting. It was very limited though. They predict traits such as lactose intolerance, eye color, wet earwax, and things like that. We now have a 6-month old daughter and we did compare the 23andMe predictions to what she is really like. If we could have had it be much more predictive we would have liked that. As it was, it was just more a novelty and fun.

PK: Lee Silver’s GenePeeks and other groups are already offering gamete screening kinds of tools in part based on predictive genetics. What’s your reaction?

NF: There are some ethical concerns there, but compared to gene editing it is relatively less problematic. If you are able to select between embryos and find the one that is the healthiest, that is appropriate. It’s about selection for health versus editing.

PK: How about the selection that is already happening of certain kinds of embryos based on genetic information? For example, what’s your view of PGD for embryo sex selection?

NF: I’m not troubled by sex selection in this country. In other countries it can be more problematic. For example, if there’s a one-child policy or gender imbalances in a society, sex selection can be much more of an issue. I think sex selection can be valuable and if, for example, a couple wouldn’t get pregnant with a child of a certain gender, but they will have another child of the other gender with the help of sex selection then that is positive.

PK: What about for PGD for trait selection?

NF: We already do this. We look for embryos without a heart condition or for ones without other conditions such as Tay-Sachs. What you probably mean is trait selection for things like eye color?

PK: Yes, that’s more the kind of trait selection I was meaning.

NF: Am I concerned about it? It’s a little weird. I have a hard time imaging I would care about my future child’s eye color. But if it really matters for someone, then I don’t find it problematic. If there are five embryos that are all healthy and one has brown eyes and the parents wants to choose that one, I don’t see that being a problem.

PK: But what if it goes further to say height, body mass, musculature, facial features, and such?

NF: Even if people do that (e.g. select for certain features), we won’t end up with eugenics. When people are given choices, they tend to choose to have children who look like them but a little better. Do we already have high expectations of our children? I think so.

PK: You mentioned eugenics. Does gene editing raise the risk of eugenics?

NF: We don’t have a pretty history of eugenics. It’s an appropriate concern to have in mind when we start talking about gene editing. Genetics is not so simplistic as we once thought. The ability to have an “effective eugenics” policy is much less likely than previously thought. I don’t think heritable human genetic modification will reawaken genetic determinism. It may reawaken a desire to improve the heath and prospering of future generations. Still we have to make sure it happens in a way that doesn’t create a society that favors determinism.

PK: What about not just selecting for certain traits, but actively using genetic modification for specific trait enhancement? Not just for genetic disease prevention, but for human “enhancement”?

NF: We are nowhere close to that being okay. But if we can show it is safe and efficacious…if we as a society are okay with editing, am I going to be the one to draw the line there? We’ll have to see. It also depends on the type of traits. Consider traits in the existing population versus totally different traits. For instance, if we can correct a person’s vision to 20-20 vision that is positive and different than say giving them UV vision or something else that is entirely outside the range of the normal human population.

PK: Looking to the future, there is slated to be an upcoming NAS meeting on germline human modification. Will that be sufficient to engage the public on this issue?

NF: What does democratic deliberation look like? A NAS meeting doesn’t engage a broad public audience. The NAS meeting will be positive, but more is needed. This issue (germline genetic modification) touches on pro-life, pro-choice, and people have concerns on “designer babies”. There are many issues here. What does society look like when we starting germline editing, traits start being edited, etc.? This justifies the need for a broader public audience.