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03/03/2017

Heritable human gene editing and the public

The recent report by the National Academies of Science, Engineering, and Medicine includes a chapter dedicated to public engagement.  Scientists leading gene editing efforts have actively sought broader public engagement, and point out that they desire this input, including from people who disagree with them about it.  They may push to win any arguments, but for the most part they don’t seem to be hiding.  I say “for the most part” because there have been apparent exceptions, such as the closed door meeting described last May that ostensibly was to discuss industry involvement in so-called “HGP write,” a proposal to synthesize an entire human genome in the laboratory and put it into a cell within 10 years.

The recent report from the National Academies points out that any ethical restriction in the U.S. on human genome editing would require legislation.  FDA does not have authority to apply restrictions other than lack of safety or efficacy.

Effective public engagement, according to the report, should address the widest possible range of effects, options, and facts and values surrounding gene editing, permitting the general public to ask questions and suggest solutions that may not have occurred to the experts.  Processes should also be transparent and, of course, lawful.  This would ensure the best, most legitimate decisions possible in a free society.  The best process would communicate, educate, consult with, and draw participation from not only interested insiders and advocacy groups but the wider public.  But the processes should also be efficient, not overly drawn out.  And what is in view is not just “selling” the idea to the public.  Rather more equipoise is envisioned.

So are there examples of public engagement processes that work?  The report cites examples in the U.K., Denmark, and France of government initiatives actively to recruit the broader citizenry in ethical policy discussions.  Denmark’s comes in for more detailed attention: a serious report is produced by actively involved citizens, but the process is still too top-down and open to gaming that tends to guarantee participation by interested insiders.  I would say we shouldn’t be surprised by this.  In the U.S., the report comments that most of the venues (government regulatory rule-making, FDA advisory committees, Presidential bioethics panels) are too passive from the public’s standpoint.  Amen to that.  The report also states that “[t]o the extent that some policy can be formulated at the state

level, as has happened in some states with respect to embryo research, cloning, and funding for

stem cell research, the states themselves can be stakeholders that engage with the federal

agencies (albeit with complex goals that include concerns about state power and independence).”  For real?  They suggest that America’s political culture war regarding embryo and stem cell research is a good model?  To my mind, that is just a case in point for how hard it is to get meaningful public engagement on big bioethical matters.

“Lessons learned” include a need to realize that public engagement is not public opinion research, and a commitment to developing information resources that are developed not only by technical experts, but by people who use “empirical social science” to minimize bias.  How one asks the question goes a long way toward determining the answer.  And one can only think of the difficulties in defining informed consent for human research subjects to imagine the many pitfalls.

The report’s recommendations suggest that actually trying heritable gene editing in a (preborn) person should NOT be attempted until a better, formal public engagement process is developed that ties directly into policy-making.  The recommendations include more research and information-gathering on effects of heritable gene editing and public attitudes about it.  To some degree, the report throws the onus back onto the medical scientists—“your grant should include money and a project to obtain/assess public engagement.”  That’s easy to say, hard to do—something that creates the risk of making it up as one goes along, with attempts that really aren’t feasible.

This chapter in the report includes a lot of good reflection.  But its recommendations are unavoidably overoptimistic.  The sheer magnitude and complexity of the effort suggested, and the difficulty in obtaining and adjudicating input from a wide range of people, many of whom simply aren’t engaged in current affairs to begin with, is staggering.  Add to that how television and social media have degraded anything resembling public discourse, and one is tempted to respond to this part of the report “Nice try, but when pigs fly.”

Anywhere to start?  For readers of this blog, maybe in the churches and with pastors.  The current issue of Christianity Today includes a game but all-too-brief essay by a pastor in Cambridge, Massachusetts who was approached by Harvard biotechnologists seeking public input into the ethics of human genome editing.  And the pastor-author, heavily degreed in economics and theology, writes that he concluded he simply would have to try to learn something about the matter.  Were there members of that congregation who could have helped brief him and the other clergy and laypeople?  We don’t know.  But readers of this blog know some people like that, don’t we?

 

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