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July-August 2017

Volume 105, Number 4
Page 200

DOI: 10.1511/2017.105.4.200

Sheila Jasanoff of Harvard University is a foundational scholar in science and technology studies. Her recent work, including a 2015 paper she published with two colleagues in Issues in Science and Technology, illuminates the history and global context of policy on biotechnology. New genetic technologies—perhaps most notably the gene editing methods using a tool derived from a bacterial immune system called CRISPR-Cas9—have reignited old debates and opened new ones about their ramifications for human evolution, public health, and society. Some genetic engineering can be done on somatic cells, which will not be inherited and will not have long-term effects across generations. Although somatic changes are not exempt from ethical concerns, the debate about new genetic technologies often focuses on whether hereditary changes to the human genome are ethical or not. For this reason, the National Academies of Sciences, Engineering, and Medicine released a report on the topic this past February. Soon after, in April, Jasanoff and her colleagues at Harvard held a meeting, called “Editorial Aspirations: Human Integrity at the Frontiers of Biology,” to discuss the status of these debates around the world. Digital features editor Katie L. Burke caught up with her after the meeting.

What is the state of the international policy regarding genetic technologies that could be used on human germlines, producing a hereditary genetic change?

In a number of countries there is an informal agreement that there will not be germline gene editing. This is true for the United States. In some other countries, such as in Germany, there is explicit legislative disapproval. The multiple countries that have signed on to the human rights charter that is enforced through the Council of Europe have agreed to something called the Oviedo Declaration on Human Biotechnologies, which contains an explicit provision that no germline alterations through biotechnology are allowed. The Oviedo Declaration is embedded in a declaration that says that the Council of Europe is to revisit these issues in line with advances in the life sciences. Later this year there will be a 20th-anniversary revisitation.

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How did the International Summit on Human Gene Editing, held in December 2015, advance the conversations regarding potential concerns about genetic technologies?

The National Academy of Sciences summit was led by three nations: the United States, the United Kingdom, and China. It pointed out the need for a truly global discussion that would consider this topic as an issue for humankind as a whole.

My colleagues and I started asking, “What should such a forum look like? What are the gaps and omissions in our current spectrum of institutions?” Most life-sciences research countries already have regulatory bodies, ethics bodies, and so on. Yet there’s obviously a felt need for something that transcends what is currently available.

What was your vision for the recent meeting you coorganized at Harvard on human genome editing?

Our vision for the meeting was to hold the first such discussion that was broader than what the National Academy has held and to float the preconditions for having this broader global discussion that they had mentioned.

What are the key preconditions for having this global discussion?

I think we’re going to need what I call “brush clearing”—identifying where blockages are and what the issues are before we get to the ultimate goal. Can we start this truly global discourse tomorrow? There are all kinds of precursor issues. Who are the right people to have at the table? What even are these tables? My hope is that the kind of discussion that my group and I have initiated over the years would help give a little push to the people who are better placed to take the next steps to build the institutions and make the discussions happen.

What divisions and challenges were identified to overcome before these next steps could be taken?

Many countries have erected a sizable barrier, for understandable reasons, between religious and secular deliberations. That division may work in technologically advanced western societies, but not in the same way in other countries. In our meeting, we drew views from the global north and south. We engaged with bodies of ethics expertise that are not just of the anglophone countries, which have a shared basis on common law.

Another point is readiness. To look for representative bioethicists around North America, one can go to an already existing network. But who are the comparable people in another place? A country as large as India does not yet have that kind of apparatus in place. It’s difficult to identify who the right spokespersons for those sorts of public values would be.

The question of how one overcomes these sorts of divisions, which affect who gets to speak for what, is a serious challenge in representative democracy. We’ve barely overcome these problems living in one of the most mature, experienced democracies in the world. How do you conceivably begin to address such challenges when we’re talking worldwide?

It’s common in these debates for someone to say that human germline editing is inevitably going to happen. How do you respond?

This argument has been widely discussed in the philosophy and sociology of knowledge and is called technological determinism, which says that once you have embarked on a technological pathway, the pathway leads you.

I think that’s an erroneous characterization of the relationship between humanity and the technologies it invents. We have all kinds of ways that we can intervene. Yes, the ways of the world are not always oriented to the directions in which each of us feels a moral inclination to go, but that is part of living in a diverse world. That inevitability argument is an institutional abdication argument. I consider it to mean, “I do not want to be a morally conscious citizen.” That is an irresponsible position with respect to the technologies that we develop.

Do you think international consensus about genetic engineering is necessary?

I am more dedicated to the idea of reasoning than of consensus. When somebody makes a decision that I disagree with in a deep-seated way, I want that decision to have been achieved on the basis of reasoning—partly because if I disagreed with those reasons, I could come back on another day and produce a better reason, collect more allies, or overcome the barriers to what I consider would have been more valid reasoning.

This relates to institutional design: Are you trying to produce institutions that deliver consensus or those that deliver recursively good deliberation? I’d go with the latter. But, for instance, Great Britain has tackled some of these same novel technologies and managed to find national rules that don’t give rise to the kind of contestation that we have in the United States. Then one has to ask: What are the institutional characteristics of a country that allow it to do that? Sometimes you cut off the uncomfortable voices so that the comfortable voices forge a consensus. In America, if you leave out those uncomfortable voices, they will find their own forum.

Rather than consensus, I ask how we arrive at a state of the world where either we are pretty comfortable with the range of variation that exists or we persuade those who are not with us that they should be. Good examples are how we got away from torture and slavery. These were fundamental questions of human worth and human dignity about which a couple of hundred years ago societies differed enough to go to war. The whole challenge of global politics is a persuasive challenge.

How has the past debate about genetic modification demonstrated how leaving out some voices can, as you’ve said, “ease our discussions now, but may kick the can of legitimate dissent and resistance further down the road of humanity’s common future”?

In the early days of genetic engineering—when it was still called recombinant DNA, which involved moving bits of DNA from one organism to another—the 1975 Asilomar Conference on Recombinant DNA was held. The idea behind it was that the experts who know best should deliberate and decide the terms of genetic modification going forward. What is clear is that some things that were left out to reach consensus at Asilomar not only still exist but, if anything, are more problematic than they were then. Questions about topics such as biosecurity, biodiversity, open field trials, and large-scale industrial applications were not on the table at Asilomar.

The scientists at Asilomar concluded that there were so many uncertainties about environmental releases of genetically modified organisms, or GMOs, that that category should be banned and should not be part of the discussion. Two years later they decided that the techniques were so precise that they could go ahead and have field releases of GMOs, and it’s become a canonical example of how not to introduce a new technology. Everybody who didn’t get a voice then, now has their worries. A whole range of opinions ended up being excluded in a closely held discussion among very conscientious, extremely accomplished, high-level molecular biologists. Those are not the only stakeholders in that debate.

What does the National Academies’ report on human genome editing tell you about the ways the scientific community is broaching this topic?

The scientific community tends to operate with a rather physical and individual view of risks. The main risks they’re usually concerned about are unexpected consequences that could increase the chance of illness or side effects, simply not work properly, or have other ramifications for an individual. That thinking, in other words, is embedded in a sort of canonical doctor–patient kind of model. The issues are not only about physical health and safety. They’re also about people’s sense of a moral universe.

This report distinguishes between gene therapies that treat disease or disability and genetic enhancements. The latter is defined as changing traits “beyond the normal range.” What sorts of problems does this distinction bring up?

If you ask people, “Do you think that a new technique should be developed that would cure a condition that causes early death in afflicted children or is an irreversible condition in the adult? Do you think we should pay for it?” I think most of us would be inclined to say, “Yes, of course.”

But how do we know what illness is? Over human history, we’ve tried to cure conditions that you and I today would say are not sickness. There are countries right now in which albinism is taken as a kind of disease condition, and it is felt that the right way to purify society of that condition is to take out the inhabitant that lives in that diseased body.

It’s not surprising that some of the first outcries that greeted this report were from disabled people who have genetic illnesses, because they could suddenly be regarded as people with conditions that society ideally should have eliminated. Subtly but demonstrably our ideas of what it means to be a well person start to shift. People are quite worried that the distinction between enhancement and therapy will gradually blur in a way that increases inequalities. If poorer people have conditions that are now deemed to be unattractive by richer people, they will both not have the resources to cure them and also look marginalized because the rich people will have cured their own conditions.

The National Academies’ report doesn’t consider the full range of complexities that philosophers have been attuned to for a long time.

At the April meeting, you warned against moves to “decontextualize science” from the technology, money, politics, and culture that influence it. Are there recent examples?

A good example is the March for Science. I mean, it’s a great slogan. Who would be against science? I’m not against science and no thoughtful person would be against it.

I think that the reason to be for science is that it stands for other things in a society, and that’s what I mean by “decontextualized.” History has shown that science thrives in societies that are open in other respects—ones that value using observational capabilities, acting upon them, and not denying the value of methods we use to validate information. The strongest science is often in the most democratic societies.

We are not leaving it to scientists alone to decide that because they can do something now, they are going to go ahead and do it. I think most people would have second thoughts about letting industry just fund whatever it pleases and make this decision through the private sector. If we explained to people what could be at stake by letting industry have its own unsupervised research trajectory in an open society, I don’t think even most corporate executives want that.

Science is a matter of collective choice. When we say just support the science or appoint the scientists, I think we do ourselves a disservice, because we invite a shallower reflection on the role of science in society than I think we should be standing for.