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A question of ethics

A conversation with bioethicist William Hurlbut about controversial gene-editing scientist He Jiankui

A question of ethics

William Hurlbut speaks to reporters during the Human Genome Editing Conference in Hong Kong. (Vincent Yu/AP)

When Chinese scientist He Jiankui appeared onstage at the Second International Summit on Human Genome Editing in Hong Kong, the news of what he would say had already zipped across the world. Two days earlier, on Nov. 25, He had told an organizer of the conference that he had helped make the world’s first genetically edited babies—twin girls by the pseudonyms Lulu and Nana—by altering their DNA while they were embryos to become resistant to future HIV infection.

He’s study has not yet been published or peer-reviewed, so the details about the birth of Lulu and Nana remain unclear and unverified. But response from the scientific community was immediate and censorious. Leading figures in the community called his work “unconscionable,” “not morally or ethically defensible,” “deeply disturbing,” “monstrous.” People questioned He’s motives for the experiment and accused him of seeking fame and fortune—particularly when the Chinese researcher enlisted an American PR company to help release YouTube videos explaining his work. Since He's announcement, Chinese officials have placed him under house arrest in Shenzhen.

The buzz over gene-edited babies is nothing new: Scientists had discovered CRISPR-Cas9, the genome editing tool that He used, in 2012. Scientists have been testing it on living cells and animals and more recently have even tried it on adults to treat deadly genetic diseases.

But He broke international ethical boundaries when he implanted edited embryos into a woman and let her deliver them, which means any DNA changes to those twin babies can be inherited by their children. Because such gene-editing technology is still relatively new, nobody knows about the potential long-term health consequences on humans.

He admitted that his university in China was unaware of his experiment, and though he says he received approval from Shenzhen HarMoniCare Hospital, the hospital later released a statement denying any discussion with He about such a project.

For better or worse, He—also known as “JK” to many—has opened a door to the future that can no longer be closed, and he has forced a conversation that grabs the attention even of laymen: What are the ethical questions surrounding human gene editing, and how should we address them moving forward?

In fact, He had been having such discussions with other scientists and bioethicists, including Americans. (He earned a Ph.D. in biophysics at Rice University, then worked as a postdoc fellow at Stanford University before being wooed back to China.)

One bioethicist in particular, William Hurlbut of Stanford University, spent many, many hours with He discussing the ethics of biotechnology over the course of two years. Hurlbut, who says he did not know about He’s experiments and had made clear to He his moral objections to human embryo research, was not ultimately able to convince the scientist to hold off his plans.

Hurlbut has been the lone scientist unwilling to peg He as a fame-chaser or money-hogger. When I spoke to Hurlbut, he said he strongly disapproved of He’s experiment, but he was also worried about the repercussions that He may face.

Here is the condensed and edited version of my interview with Hurlbut.

Tell me about the atmosphere at the Hong Kong summit. Even before we got to the hotel, people were talking about it. When we got there, it was the major thing in everybody’s conversations. The conference was supposed to be about a lot of things, but everybody talked about this the whole time.

It was just really powerful to be there. I’ve done some interesting things in my life, but this was among the most interesting so far. It was like being in the very epicenter of the human story. A collection of people from all over the world was talking about one of the most important moments in human history, one with great significance for the human future.

For you, the news must not have been all that shocking. No, because I had talked to JK over the last two years, and I had consistently cautioned him not to do this independently. I was in no way advising him in any kind of official capacity, and I didn’t know that he was implanting embryos.

One question JK specifically asked me was, “Why is there such a concern in America over experimenting on human embryos?” He wanted to know if it’s just a fringe of fanaticism, or if it was a more mainstream concern. And I told him that during the debates over embryonic stem cell research, approximately half the nation—and not just religious people—opposed the use of human embryos in research, that even then-President George W. Bush opposed it. Because scientifically, the embryo is the earliest stage of human life, something seems wrong in using it for a research project, to use it as raw material.

‘I knew he was exploring the boundaries of science, and I enjoyed talking to him, but I also worried about him. I wanted to help him, and I wanted to prevent this.’ —Hurlbut
 

And how did he respond? He didn’t feel the intuitive force of what I was saying. At one point he put his forefinger and thumb together and said, “How can something so small count as a child?” I tried to explain to him that there is value in that small thing because that’s still the beginning of human life. At that point he had one child, so I told him, “That’s how your little girl started out as.”

I didn’t find him insensitive or anything. In China, I was told that there’s a basic belief that you’re not a full human being until you’re born. There’s much more openness to using human embryos in certain countries, and China is one of them.

What else did you guys talk about? Our conversations broadened into deeper and more profound issues about the whole relationship between human beings and the natural world. At one point I talked to him about how beautiful, how mysterious nature is, because although there’s suffering and death, we also see beauty in the natural world, so we know there’s some kind of mystery operating through nature. Then I mentioned the beautiful redwood trees that grow in my backyard on the edge of a creek, and that was when I realized he had never seen a redwood tree, even while working at Stanford, 10 minutes away from the trees. So I said, “Let’s go for a walk,” and I took him out to a very beautiful nature preserve behind my house where there are miles of redwood trees. And he just loved it. The next time he wrote me, he said, “Can we take another walk when I come?”

He knew where you stood on the ethics of human gene editing and the use of human embryos, yet he constantly sought you out? Yes, and I was really happy to meet with him. I like him. He’s a nice guy. People say he did this for fortune and fame, and well, nobody is immune to those things, but I really got the sense that he wanted to make his scientific knowledge count for something good. So I was hoping to explain to him the landscape of the social and ethical issues of his work, so that he would proceed morally and not rush into things.

I knew he was exploring the boundaries of science, and I enjoyed talking to him, but I also worried about him. I wanted to help him, and I wanted to prevent this. At one point I said to him, “JK, you have to be very careful. You have a young family, you have a promising career, and you might be criticized deeply for this.” And he said, “I’m willing to do this because I know there are many patients with great need out there, and there can be a great good from this.” He had an idealistic view. He thought people would at first be negative about it, but then come to realize that the door has been opened to something good.

You were already suspecting that he might go ahead and do it. Yes. When I met with him in mid-October, he told me that an important paper was coming out, but he wouldn’t tell me the details. I started suspecting that he had implanted the embryos or maybe even had birth, and I was very worried about it, so I had strong conversations with him about it.

Could you have contacted the authorities? Well, I didn’t know anything for sure. Also, I knew he had talked to one of my colleagues about it in February. I knew they had an argument about it, and we believed he had stopped JK from doing this.

How did you feel when you heard what He did? I was disappointed and sad, because I knew it was not going to end well, in three ways: First, JK is a very promising scientist, well-educated, and a very nice person, and his career is never going to be the same. He might have damaged his future. Second, he put children in danger with his experiments, and that’s not right. Third, the whole field of gene editing science got a bad reputation because of this.

How does this incident affect the future of biotechnology? Like everything, there’s always something good to be made out of the situation, and I think in the end, JK will have done at least one favor for the human species. He put everybody in the world on notice that the future is coming faster than we thought, that there are serious and powerful challenges emerging with the power of our advancing technologies. We need a broader, deeper conversation collectively as a human species as we enter into this very significant arena of intervention in human life. Otherwise, these new technologies will be misused with tragic consequences.

Kin Cheung

He Jiankui speaks during the Human Genome Editing Conference in Hong Kong. (Kin Cheung)

Has there been such a conversation taking place? There have been some discussions taking place, but it’s not been easy to have them because it’s such a complicated subject and the average person doesn’t understand the subtleties of the genetics involved. I have been trying to organize these kinds of conversations. Jennifer Doudna, who discovered CRISPR-Cas9, and I are co-leaders in a project to increase discussion and deliberation and education on this.

Human gene editing is not just a scientific tool to help treat diseases. It carries many implications—people might want to filter through embryos and take out ones that they think are better than others and manipulate embryos to produce children to their liking, and that changes the whole relationship with having children. It turns what should be procreation and love into production. And that production will never be perfect. They’re going to end up with mistakes and disappointments. If your attitude to having children is one of production, then it changes the way you see the child. You see? This has so many dimensions to it—it’s not just a simple matter of treating a disease.

It sure is complicated, but it sounds like a discussion we ought to have. I’m hopeful that now these conversations will increase. One of the ideas Jennifer Doudna and I agreed on when we started our project is that the average citizen needs a voice in these matters. These are not just decisions to be made by leading scientists or social planners. These are matters for the whole human family. This is a species issue. It’s not just a matter of personal choice, or an issue of social policy at a national level. We’re talking about the collective genetics of our entire species.

What are the ethical boundaries we shouldn’t cross? A line that should not be crossed, not just in genetics but in all of life, is doing things with idealized intentions, but in the process violating the very fundamental coherence of love. Love, for me, is the judge of what makes something right or wrong. The ends don’t justify the process; you have to look at both the means and the ends. And the means always should involve love. Love is hard to define, but easy to know when you see it. It’s one of those mysterious things where you can never exactly say why something was unloving, but you can feel it. Love should honor and respect every individual. You should never treat human beings as raw material or regard them instrumentally toward some other end. It really comes down to the Golden Rule: Do to other people what you would want done to yourself.

The greatest temptation is the temptation to compromise individual human dignity in order to arrive at some future utopian vision of greater human happiness. Utopia will never arrive, and you don’t use human beings as stepping stones to get there.

What would you say to He Jiankui should you see him again? I would tell him, “Your life has not ended.” I’d say something to encourage him going forward, because he can still have a very good and useful contribution through his work, and through his love for his wife and his children—and he shouldn’t let this incident cause him despair. There is reason to pray for him. This story is far from over.

Sophia Lee

Sophia Lee

Sophia is a features reporter for WORLD Magazine. She graduated from the University of Southern California with degrees in print journalism and East Asian language and culture. She lives in Los Angeles with her cat, Shalom. Follow Sophia on Twitter @SophiaLeeHyun.

Comments

  • PaulC
    Posted: Thu, 01/10/2019 08:28 pm

    William Hurlbut seems very considerate, respectful of both Mr. He and people,  He seems to have a world view of God creating the world, but never mentions God.  Is this intentional?  Christians commenting on this issue, naturally bring God our Creator into the discussion.  For many that is unwelcome and a No-No.  But we should not be afraid to bring God's word into the discussion.  To ignore Him is to guarantee that we will get it wrong.  

  • Steve Shive
    Posted: Fri, 01/11/2019 05:50 am

    Thanks for this fascinating report. There is a lot here to think about and mull over.Indeed the implications are staggering while at the same time being enigmatic. I will think about this and judge it based on its merit, what is actually written. I won't evaluate it based on what it doesn't mention.

  • Jeff's picture
    Jeff
    Posted: Tue, 01/22/2019 07:24 am

    I do not share his optimism. IVF and embryo selection have been going on for decades. Genetic testing with recommended abortion is common. Iceland says it has virtually eliminated Down's Syndrome. We've been softened up for He Jiankui's brave new world.