No Designer Babies. Yet.

Earlier this week, Stanford University cleared three of its professors of any wrongdoing regarding their interactions with He Jiankui, a Chinese researcher who created the world’s first gene-edited babies—an event widely criticized by the international scientific community.

William Hurlbut

The three professors—Stephen Quake, William Hurlbut, and Matthew Porteus—had occasionally communicated with He since the Chinese scientist was a postdoc student at Stanford in 2011. The university’s inquiry not only exonerated all three profs, but also found that they had strongly discouraged He—whom they refer to as “JK”—from pursuing such work.

Hurlbut, Adjunct Professor and Senior Research Scholar in Neurobiology at the Stanford Medical School, has been vocal about his disapproval of He’s work. Hurlbut, who served on the President’s Council on Bioethics under George W. Bush, is keenly interested in ethical issues surrounding biomedical technology.

ORBITER caught up with Hurlbut yesterday to discuss the situation, what he knew (and didn’t know), and the general state of things today regarding gene editing, the moral and ethical issues, and where we go from here.

Stanford’s report cleared all three of you. Was that expected, or were you holding your breath waiting for results?

Well, I wasn’t holding my breath. I knew I conducted myself honorably and with good intentions all the way around, so I wasn’t worried in the slightest bit for any of us.

The thing about this [incident] is that quite a few people knew about it. It’s not like it was done off in a corner. JK got a certain amount of encouragement and advice from others, both in China and in the United States. It wasn’t like he was seeking fame and fortune. He was a young, inexperienced scientist who made a lot of mistakes.

But he also was trying to do something of real value. TIME magazine just named him as one of the 100 Most Influential People in the world, putting him in a category called “Pioneers.” A pioneer is somebody who moves ahead of the pack, but he made mistakes, so it’s sort of a strange way to categorize him.

These are very complicated matters. There’s promise in this overall technology, and we have to learn how to use it properly. And that’s going to require a lot of discussion—and some stumbling.

But it’s something we shouldn’t try to hide. We should bring it out in the open, talk about the difficulty of it, and collectively use our human intelligence to find a good way to move forward with constructive uses, and preempt negative things.

Did you know that JK was trying to attempt this? Or did you find out about it in November like the rest of us, when the news broke worldwide?

I knew that he was heading in that direction long-term, and I talked to him over the preceding 18 months and tried to slow him down. I told him he needed to think more carefully about the ethical issues. I told him he needed to follow the [Chinese Academy of Medical Science] recommendations regarding engagement with his countrymen and the global scientific community, and that he should not move forward till it was very clear that people approved it. I did not know that he had implanted embryos in womb of a woman until after the twins had been born.

[Note: The Chinese Academy has voiced its opposition, and authorities say He broke China’s laws. Recent reports say He has been under house arrest. He was also fired by the Southern University of Science and Technology of China in Shenzhen (SUSTech). Hurlbut has been in touch with He, but said he couldn’t discuss “his current state of things, because it might put him in danger.”]

How did you react to the news when you heard it?

I was pretty strong in my comments to him. In early 2018, we had a long conversation about how decisions like this—with such great magnitude and meaning for human beings collectively—should be handled. I told him that one of the great strengths of our democracy is the way we can pool the collective wisdom of the community. I cited The Gettysburg Address, and I said the famous last line: “of the people, by the people, for the people.” We are stronger and wiser together than we are individually.

My largest perspective on this whole matter is that it was a failure of democratic process, which is an ironic thing to say to somebody from China. But it’s something we’re going to have to work toward collectively, because if we don’t cooperate with one another, the potential dangers of this technology—both for individual patients and for our collective human community—will be very great.

Do you know anything about the health of the twins, and whether they’ve had any side effects? What should doctors be looking for as these girls grow?

I really don’t know. JK was taken off the case, if you will, while they investigated him, and the following of the twins was put into different hands. It’ll depend on whether he had any off-target effects from the gene editing, but that remains to be seen. If there were, that could potentially be dangerous for the twins; they might disrupt something in such a way that they cause developmental problems or even cancer.

I have talked to JK several times since, and he told me that the vast majority of the cells he looked at were absolutely clean of off-target effects. So at this point, from what I know, it’s not evident that there’s any grave danger for these twins.

But I want to again say I don’t think it was appropriate for him to be doing this without more careful collaboration with the general wisdom of the scientific community, because it’s essentially a human experiment, and we don’t experiment on people.

Did you have other ethical concerns about the procedure?

He “JK” Jiankui

I also didn’t like it because he was using in vitro fertilization (IVF), and that procedure comes with its own dangers—a higher frequency of congenital defects which are not necessarily genetic, but things people are born with. IVF has very unnatural dimensions to it; natural conception does not take place in a laboratory dish with light shining on it.

I don’t favor using IVF in a circumstance like this where it’s voluntary and there are other medical means of dealing with the very thing he was trying to address. I sent him lots of  literature about the dangers of IVF. This is an issue for our whole society, which seems more and more willing to use IVF for other reasons—namely, filtering out embryos that would otherwise be healthy, but with a tendency toward some physical or mental capacities that some statistical analysis of the individual embryo suggests. There are actually IVF clinics offering genetic tests, and then the parents can choose which embryo has the profile they want. That is not a reason to do IVF, in my opinion. You can understand how people do it for serious diseases, but to pick and choose the kind of child? It’s not the right way to go.

When you’re making discoveries in the lab that could mean great things for humans, including eradicating diseases, that’s exciting. So what’s the proper procedure for moving from the lab to actually something new on humans?

The way you phrase the question makes it pretty hard to say. It’s not as simple as that. First of all, there are scientific challenges involved in this procedure and there will probably always be risks. But in the meantime, the very study of it involves the creation and destruction of human embryos. Some people think that’s okay, other people do not.

I saw this coming years ago, when I was serving on The President’s Council on Bioethics, that it wasn’t just going to be stem cell research that would challenge our moral boundaries on these potential uses of human embryos. The stem cell issue [in the late 1990s and early 2000s] was an intense moment because it was the first time when we seemed to be at the point of using human embryos as a resource for research. But in fact, it was much earlier than that, even before IVF was invented [in 1978], when they were creating human embryos to study what happened in the dish. There were many failed attempts at implanting embryos, and many more over the past 40 years. In about 2005, David Alton from the House of Lords told me that the UK had already used something like 300,000 embryos for experimental purposes.

Now, if there were no moral issues associated with that, there would be an unlimited number of uses of human embryos—studying developmental biology by knocking genes in or out, or studying the effects of pharmaceuticals on early development, and many other uses.

So now we’re at a crucial juncture where we’re going to have to decide as a society what constitutes a moral way forward. But there’s going to be a lot of disagreement on that.

One of the sharpest disagreements will be about techniques to eliminate genetic diseases from a family lineage. That would involve many, many embryos to experiment on, and that’s already happening in quite a few places, including the United States—though not with federal funds, because it’s against the law. But it can be with private and state funds.

Seems like a lot in common with the abortion issue—people on one side saying the fetus is just a blob of tissue, and those on the other side saying it’s a human, with full rights, from the moment of conception. And it doesn’t seem to be getting any closer to reaching a consensus, morally, socially, or politically. Similarly, won’t the ethical issues with embryos and genetic editing also always be at a stalemate?

It’s an interesting question. To me, it’s just plain obvious that once fertilization has taken place, where sperm and egg are joined, you have a living human organism. That embryo in the dish is in the earliest stage of development of a human being. When I first met JK, he thought the controversy about using human embryos was a fringe idea in the United States, just a few fanatics. And I said not at all! A huge number of Americans see the early stages of embryonic life as the beginning of a human life. He put his first finger and his thumb together and said, “You mean something that small is as important as my two-year-old child?” And I said, “JK, your two-year-old child started out that small, and that’s an undeniable scientific reality.”

If somebody tries you tell you that an embryo is not a living human being, that’s just sophistry and not good science.

There was an op-ed in Nature journal from a coalition of scientists calling for a moratorium on genome editing. Did you agree with that call?

Basically, yes. But would it serve both science and society properly? I’m inclined to think it would, but I haven’t heard all the arguments. The thing we have to worry about is not mainstream scientists who take the current position of the National Academy seriously. It’s the people who think they understand those positions and still go ahead anyway. Many people won’t even care; they’ll do it because they think that they know better, or they can make some money on it. It’s likely to lead to a lot of clinics where people sell therapies that don’t actually work or are potentially dangerous. That’s already happening with stem cell research all over the world, with clinics peddling science that doesn’t work. And people are very vulnerable to it because their needs are very great.

And now you look at the market for parents wanting babies that have some superior trait that they think is going to make their baby’s life better. There will be a market for that. So it’s potentially socially dangerous as well as scientifically dangerous.

That Nature op-ed suggested that the scientific community come up with guidelines on gene editing. But are mere guidelines sufficient? Or do we actually need prosecutable laws, with the threat of fines or even prison?

Efforts to form international guidelines on matters like this have not been very successful. The United Nations tried to try to come up with a moratorium against human reproductive cloning, and I think they got a majority of countries to agree and maybe pass some kind of nonbonding admonition.

I completely agree with you: “Guidelines” aren’t going to stop it. I’m not a political scientist, but I think the only way this will work is if there’s a very strong agreement on these matters from major countries—including the United States, Europe, and a few major countries in Asia—that would be enough to declare to the world, “This is unacceptable.” And for those countries who don’t agree, the governments of the agreeing countries could collectively say, if you do this, there will be economic consequences. Maybe that’s too severe; maybe I’m being unrealistic.

What excites you the most about the latest science on gene editing?

I’m very excited about the whole thing. There’s a very wide range of applications that can be the next stage of human progress. It’s really like Moses on the mountain—it’s a blessing or a curse, depending on how we use it, and every one of the ways of using it comes with its own dangers.

There are lots of compelling applications of gene editing for somatic genetic diseases [as opposed to germ-line mutations, which are passed on to the next generation]. For example, for something like cystic fibrosis, we might be able to go in during development in the womb and repair the genes. It doesn’t have to be done in the embryo or in the sperm and egg, it can be done later, even after birth for some diseases. And that’s going to be extremely exciting because right now there are nearly 10,000 single-gene genetic diseases which could be addressed theoretically. And 95 percent of them have no treatment available and certainly no cure.

It would be good to get some of these genetic diseases out of the overall gene pools of the human species. I don’t see any benefit to having the gene that causes Lesch-Nyhan disease, a genetic disease in which little children chew their own fingers off because there’s some kind of missing nutrient; it’s horrifying. If we can get that out of the gene pool, that would be good.

But there are many problems associated with such an effort, and they go all the way from the scientific to the social to the moral questions. The technology that will allow people to alter and repair genetic diseases in a family lineage would also allow another family to select against something like hearing, so their child could conform to the family standard of deafness. There would conceivably be people who would try to eliminate dyslexia from their lineage. There will be people who will want specific phenotypic traits, like height or eye color or hair color.

Most of the things we care about—intelligence, longevity, beauty—are controlled by many, many genes, and that will not be very easy. Maybe you can make a little bit of difference, but not much. It just gets really complicated.

I don’t think designer babies are going to become a major problem in the decades ahead, but maybe eventually.

What about the possibility of reducing pain and suffering?

We want to be careful not to build a moral case based only on the relief of suffering, because suffering is one important dimension in the equation of what’s moral. There’s a lot of other things that go into the equation. There’s a lot to be balanced, and there are some things that should be absolutely prohibited. As we go forward on these issues, we’ll hear more compelling stories of what can be done to take away or relieve a human problem. And rightfully so. But they can’t be the only thing in the discussion.

We’re so vulnerable in wanting to alleviate suffering. But those same arguments have been used in the abortion debate in ways that I think are unacceptable. Just because you can take away a problem does not justify aborting a baby. I just don’t see it. It’s not that I’m unsympathetic to the depth of the problem that an unwanted pregnancy can bring into a human life. But abortion, to me, is the wrong answer.

C.S. Lewis said we should answer all of our problems with more love, not less love. I think that’s good advice.

Managing Editor, ORBITER magazine