Exploring the Ethics Behind Altering Our Genes

Most of us have at least one or two aspects of our physical selves we wish we could change. Height, weight, eyesight, baldness–even more seriously, predisposition for certain disorders or diseases–these are the products of genetic determination that, if a magic wand fell into our lap, we’d likely change without a second thought.

The field of genomics may well be that magic wand. It won’t work quite so easily, but advancements in genetic science may one day allow us to alter not only our hereditary destinies, but that of our children and generations beyond. While the positive features of this potential are seemingly boundless—elimination of genetic diseases and the general improvement of humankind—so too are the ethical questions that come along with them.

Jennifer Hochschild is the H.L. Jayne Professor of Government at Harvard University who studies and teaches about the intersection of American politics and political philosophy. She’s also a genomics researcher tasked with studying the potential effects and implications of genomics as it advances ever forward, as well as the population’s attitude toward this kind of species-altering science—humongous questions that will soon be at the forefront of political and moral discussions the world over.

BTRtoday had the chance to sit down with Hochsfield to discuss the looming impact of genomics, the ethical issues surrounding it, and how it will be broached going forward. Below is a truncated version of the two-part interview, which you can listen to in its entirety here, and here.

BTRtoday (BTR): What are some of the biggest political and ethical issues surrounding the field of genomic studies?

Jennifer Hochschild (JH): I think there are several now, and there are certainly going to be more over the next few decades. The most visible and contentious, ethically, politically, and medically, is clearly prenatal testing. We’re not quite there yet scientifically and medically but I think it’s coming down the road, the possibility of not just identifying genetic diseases before a fetus is born but actually editing the genes to correct genetic diseases before birth. Most people would probably think that’s a good idea if we could do it, but then it gets more complicated. What about genetic tendencies for being dangerously overweight, or genetic tendency for low IQ? Do we think that people ought to be able to edit genes before birth to eliminate those sorts of phenomena? And then it gets even more complicated—what if you want a girl rather than a boy? And more, what if you want someone who’s especially tall? What if you want a baby who’s particularly athletically or musically inclined? The question becomes what type of gene editing is legitimate—some people will say all, some people will say none at all.

BTR: Is this the type of issue where the ethical questions surrounding it will guide the science, or will the science continue advancing and the ethics will follow those developments?

JH: There are certainly scientists who say and believe that their central commitment is to the science, to do the best job they can with the empirical, very complicated questions of how genomics is developing, how to do gene editing in a way that is safe for the recipient, and so on. Their job does not include thinking about the ethics or the politics or the personal decision making—not that they don’t think those things are important, but they have no special capacity to think about those questions any more than any other citizen.

There are other scientists who, of course, think the opposite—that if we’re going to do this kind of work, we have a moral public responsibility to think very hard about their implications but also to communicate with the public to explain what we’re doing, and, for some, to hear back from the public or elected officials about whether we ought to be doing this kind of work.

I think people are going to vary. I think there are some scientists who simply are not very well suited to engaging on the public dimensions. It’s not what they do. But in my view, many scientists do think they ought to be involved and ought to be involved—this is just too big a deal. I see a range of appropriate behaviors, most of which involve genuine public engagement on the part of the scientists themselves.

I suppose the closest analogy I can think of is nuclear weaponry in the decades after World War II. This wasn’t something that should’ve been left purely to the physicists (which many of the physicists agreed with), nor should it be left purely to the politicians who don’t understand the physics.

BTR: The comparison to nuclear weapons is an interesting one, because there are a lot of records of physicists involved who were wary about their actions due to the way in which it would intrinsically change warfare and, by proxy, the world. Does genomics really have that strong of a potential impact on the way we view, create, and destroy life?

JH: I think it is in that realm. There are very few issues that have this sort of world historical consequence. Of course, I’m a researcher, and all researchers think that what they’re studying is the single most important thing in the world. Nevertheless, I do think we’re up there in the realm of nuclear weaponry for several reasons. One is the whole issue of abortion, which is of course enormously fraught religiously, personally, politically, legally, so any kind of genomics research that gets connected with the issue of when life begins and who gets to decide is very difficult and intense.

Another way in which it enters that realm is through the old American—but not uniquely American—history of eugenics, which for a time was high-end science. Louis Agassiz, the famous Harvard professor who has big buildings named after him, was a believer in racial science that blacks are physiologically different from whites. Some people argued that they’re actually separate species, and then of course later, the belief in racial science moved in the direction and belief in control over population growth through either discouraging or actually prohibiting the “wrong” kind of people from having babies. This was not hidden, secret racism—this was science, capital S.

Most Americans have backed way, way off any idea that eugenics is an appropriate scientific practice. And geneticists know this history of eugenics really well. They will say over and over “we are not doing eugenics, we do not endorse it, we think it is evil and wrong and bad science, among other things.” One person that I interviewed early on basically said that eugenics is the long tale—that once you start talking about genetics, you have to keep in mind the eugenics past. It has a very strong racial component, a very strong class component. Americans were not Nazis, but the Nazis explicitly picked up on American eugenics policies and practices and tried to do it even better.

So genomics has at least those two very strong, powerful, dangerous facets. The other side of it is anybody who has witnessed or experienced terrible genetic diseases have to understand why some scientists find this so powerful. If you can stop terrible suffering, wouldn’t that be a good thing to do? Just like the nuclear physicists, if we could end World War II, wouldn’t that be a good thing to do? So the positive sides to this are powerful, as well as the dangers. And just as in 1945, I would expect that if you’re in the middle of this research process right now, or are pregnant or have a newborn with a terrible disease, it’s very hard to see what the right thing is to do in the long term.