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Genomics

On crossing an ethical line in human genome editing

Following the news of gene-edited babies, bioethicist Ben Hurlbut advocates a soul-searching shift away from the focus on technology in vetting potentially harmful science

by Rick Mullin
December 12, 2018

 

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Credit: Courtesy of Benjamin Hurlbut
Benjamin Hurlbut

The scientific community has failed to include a broad set of voices—including those of nonscientists—in discussions of whether and when to edit the human germ line so alterations are passed down to future generations, according to Benjamin Hurlbut. A professor of biology and society at Arizona State University and a prominent voice on the topic of genome editing ethics, Hurlbut was one of the ethicists and scientists who met with He Jiankui in the months leading up to experiments that, He claims, resulted in the birth of twin girls whose genomes had been altered using CRISPR-Cas9 technology. Hurlbut also attended the Second International Summit on Genome Editing, which took place last month in Hong Kong just days after news broke of the babies, who He calls Nana and Lulu. In an interview with C&EN, Hurlbut discussed the significance of He’s experiments as well as He’s discussions with others. This interview has been edited for length and clarity.

Vitals

Hometown: Woodside, California

Education: BA, classics, Stanford University; PhD, history of science, Harvard University

Mentor: Sheila Jasanoff, Pforzheimer Professor of Science and Technology Studies, Harvard University. Hurlbut and Jasanoff remain collaborators on establishing an infrastructure to support international debate on the ethical use of emerging technologies.

Most recent book read:The Human Condition by Hannah Arendt

Have we reached any kind of turning point with the reported birth of Nana and Lulu?

There is definitely a turning point. This real and urgent issue is no longer speculative. But it’s not a turning point in the sense that now it’s here and there is nothing we can do about it and this is just simply going to happen. I think that part of the reason that it came is that there was always the prediction that it’s coming and there’s nothing we can do about it. Well, by saying that, we’ve sort of let it come.

So, what do we do now?

Well, there is a difference between setting limits by not having the technology and setting limits in spite of having the technology. And just because the technology exists and has been used doesn’t mean we can’t set significant limits on it or even prohibit it. So there is a turning point in that we now have an event that heightens the urgency for public conversation about what should happen next. That’s important. We should capitalize on that.

Is He Jainkui’s experiment likely to dominate such a conversation?

I think that one of the challenges of having that broad conversation is seeing that this is not just about one guy who did one experiment that produced two children. It’s about a trajectory. And that trajectory is not only about germ-line genome editing. It’s about a whole range of emerging technologies for intervening in and manipulating human life in ways that are in some respects scientifically promising and exciting and in others worrisome.

What technologies would you put on par with gene editing in this regard?

In human reproduction, genome editing is probably the main thing to pay attention to. Another that will have a significant bearing on reproduction is genetic testing and screening, especially prenatally. These are very crude tools at this phase. But they are developing rapidly and one can imagine a whole range of ethically problematic ways they can be used in reproduction.

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I suppose ethical considerations really don’t focus on the technology as much as on the use of the technology.

That is exactly right. One of the things that inhibits a broad public conversation is a too-narrow focus on the technology of the moment instead of asking questions about its meaning in our lives. If we think about this more as a matter of having children and how we relate to our children and what our responsibilities are as parents to our children—or for that matter, as members of society to people who are brought into that society—our questions will be different from asking about the risk of off-target effects in a given experiment or whether intervening in this gene for this purpose in this baby was a good or bad idea, whether it was medically warranted or not.

How did the Hong Kong summit go? In the US, we got the sense that it was a powder keg going in, given He’s scheduled talk on Nov. 28.

It was remarkably tame considering how much anticipation and excitement there was around it. One thing I found interesting in He’s question and answer session is that a lot of the questions were focused on trying to nail down something that was wrong with He’s experiment. There were a lot of questions about the informed consent process. I thought this was kind of odd, because I think you can say that this experiment was irresponsible without really knowing very much about the details of how it was done.

How did the summit end?

It surprised me. At the previous one three years ago, the organizing committee recognized there was nothing like a broad societal consensus on gene editing. Yet this year’s concluding statement basically opened the door to human germ-line editing. It calls for developing a translational pathway for moving human germ-line editing from laboratory to clinic. In effect, what they said was that He did the right work the wrong way.

You were quoted in a recent STAT article saying that He was not a rogue scientist, but rather a product of a research culture that encourages mavericks. Rogue or not, a lot of people think He was motivated by getting his name on a “First Ever” certificate.

Well, of course he was. That is what scientific competitiveness is about. There is this culture of famous firsts. And this is not the first instance of an experiment without maybe enough preclinical research as one would have wanted that produced a child that was revealed through the media and not through a scientific outlet. That famous first goes to Robert Edwards and Patrick Steptoe who developed in vitro fertilization. There are very strong parallels. Edwards won the Nobel Prize for that work in 2010. Reproductive medicine has rewarded a kind of recklessness. One thing we should take away from the recent event is the need for the scientific community to step back and ask itself in what ways it might be implicated or even culpable.

You and others met with He before the babies revelation. Were people actually aware that He was going to initiate a pregnancy?

No. But people suspected he would. I certainly did. Everybody knew he was doing genome editing on human embryos in the lab. That is why he was invited to participate in a meeting hosted by the Innovative Genomics Institute, Jennifer Doudna’s group, at the University of California, Berkeley, in 2017 where I met him. But people are experimenting on embryos all over the world.

Were people in a position to try to stop him?

It’s hard to say. A lot of informal conversations happen in the background of science. And yet it’s also kind of the norm that you don’t question the freedom of a researcher to do the kind of research that they want to do. You might express concern, you might try to dissuade, but exposing them would be kind of a serious violation of scientific norms.

He was looking for input from people other than scientists.

Yeah, that’s right. He clearly was hungry for input about the ethical dimensions. He is not a cowboy in the sense of not caring. He was thinking about the questions and making judgements for himself. I think one of the problems this reveals is that a guy like this might think that those judgements were his alone to make.

I couldn’t help noting, as this story broke at the end of November, that our Jan. 1 issue this year featured a guest editorial by Roald Hoffmann commemorating the 200-year anniversary of Mary Shelley’s novel Frankenstein.

I think that a great question to ask on the 200th anniversary of Frankenstein is, “What makes a monster?” Shelley’s great insight is that a monster is made in the failure to examine the ways we might deploy our powers of knowledge and technique past the limits of what is right and appropriate for human beings to wield. It is the failure to ask questions with seriousness and humility that makes a monster.

CORRECTION: This story was updated on Dec. 13, 2018, to correct the spelling of Sheila Jasanoff’s name.

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