Matthew McCoy, Postdoctoral Fellow in Advanced Biomedical Ethics, Penn University
Earlier this year, an expert committee convened by the U.S. National Academies of Science and Medicine published a report on the science, ethics, and governance of human genome editing. Peppered throughout the report’s 200-plus pages were repeated references to the need for more “public discussion” about ethical issues raised by human genome editing.
Readers are told, for instance, that:
a robust public discussion about the values to be placed on the benefits and risks of heritable germline editing is needed now so that these values can be incorporated as appropriate into the risk/benefit assessments that will precede any decision about whether to authorize clinical trials.
a robust public discussion is needed concerning the values to be placed upon the individual and societal benefits and risks of genome editing for purposes other than treatment or prevention of disease or disability.
[there is a] need for ongoing public discussion about how regulatory bodies should draw distinctions between such things as therapy and enhancement or disability and disease.
These calls for public discussion have become a “well-worn chestnut in policy analyses of human genetic engineering,” but they are by no means limited to that domain. Writing about gene drives in non-human animals, Elizabeth Alter called for “a broad conversation about what kinds of advances and risks we want to embrace.” Addressing a range of emerging technologies from artificial intelligence to nanotechnology, Daniel Sarewitz called for an “informed public discussion” and letting “democratic deliberation lead the way in determining which values and world views ought to be protected and which sacrificed.” Urging a more iterative approach to the regulation of emerging technologies, Alta Charo argued for providing “increased access to existing venues for public discussion…as well as new opportunities at the state and local level for community education and discussion.”
Despite this growing chorus of calls for public discussion, it is often unclear what such discussion actually entails, what problems it is meant to solve, and how it is meant to influence health and science policy making. The ambiguity surrounding calls for public discussion was evident in some of the reactions to the genome editing report. One critic complained that despite its calls for public discussion, the report appeared to exclude the public from meaningful participation in key policy decisions about the future of human genome editing. But another suggested that if we take the committee’s claims about the centrality of public discussion at face value, then, “presumably, until they are ratified by a robust public discussion, [the committee’s substantive recommendations] have to be considered premature as policy prescriptions.”
There are no doubt legitimate debates to be had about how much, if at all, health and science policy making should be shaped by input from the lay public. Unfortunately, most calls for public discussion are too vague to allow for an assessment of their merits. In the face of what has rightly been called “the groundswell of recent interest in ‘democratizing’ science,”[viii] those calling for more public discussion should aim to clarify their proposals by clearly answering several questions:
What is the goal of public discussion? Proponents of public discussion often cite the aim of eliciting public values, but more needs to be said about why such values are important. Is the goal to learn where the public stands so that public messaging from scientists and policymakers can address their concerns more effectively? Is the goal to enhance deliberation by presenting value-based arguments that expert decision makers would not have thought of on their own? Is the goal to treat public values as providing independent reasons for pursuing (or choosing not to pursue) certain science and technology polices? Each of these (and many other) goals has been suggested by different arguments for eliciting public values, but they reflect very different visions of the ends of public discussion.
How, if at all, will public discussion be formalized? In some cases, calls for public discussion seem to imply little more than a kind of idealized version of the everyday political talk. In other cases, public discussion seems to refer to a more formalized process of public engagement or deliberation. Sarewitz, for instance, approvingly cites a model of public deliberation developed by the World Wide Views (WWV) alliance that relies on multi-cite deliberation among multiple groups of roughly 100 participants. While references to specific tools for enabling public discussion are a step in the right direction, they are incomplete as policy proposals. It may be true that events like the WWV forums show that members of the public are capable of deliberation, but that doesn’t tell us anything about their strengths and weaknesses relative to other mechanisms for fostering public discussion. Choosing a formal process for fostering public discussion involves making tradeoffs—for instance, should policy makers aim to keep the process small and highly structured or open it up to as many participants as possible? Which members of the public should be invited to participate? All who are interested or a randomly sampled group? Those calling for more public discussion should do more than provide examples of mechanisms of public deliberation that have been used before; they should explain which mechanisms they favor and why.
How should public discussion influence the policy making process? The genome editing report argued that public discussion should precede “any decision about whether to authorize clinical trials” of heritable germline editing. Does this imply that if members of the public reject heritable germline editing that clinical trials should not move forward? Or is the idea that there should be public discussion and then policy makers should simply do what they think best? Sarewitz suggests that democratic deliberation should “lead the way” in determining which values should be protected in the regulation of emerging technologies and also that public discussion “should feed into and set the boundary conditions for expert panels.” Though these statements seem to speak to the connection between public discussion and policy making, they are vague and, in fact, seem to suggest different conceptions of public discussion’s influence on the policy making process with “leading the way” implying a more prominent role than “feeding into.”
It seems likely that calls for public discussion will continue to proliferate in the coming years. But unless their aims and approaches are specified in the ways recommended here, those calls will ring hollow. If we’re going to have a real debate about the merits of public discussion as a response to ethical challenges in health and science policy making, we need to get clear on what we’re talking about.
Matthew was awarded a Caroline Miles Scholarship that funded a stay at the Ethox Centre, University of Oxford, in May 2017.
 National Academies of Science, Engineering, and Medicine, Human Genome Editing: Science, Ethics, and Governance, 2017, https://www.nap.edu/catalog/24623/human-genome-editing-science-ethics-and-governance.
 Eric T. Juengst, “Crowdsourcing the Moral Limits of Human Gene Editing?,” Hastings Center Report 47, no. 3 (May 1, 2017): 15–23, doi:10.1002/hast.701.
 Elizabeth Alter, “The Risks of Assisting Evolution,” New York Times, November 10, 2015, https://www.nytimes.com/2015/11/10/opinion/the-risks-of-assisting-evolution.html.
 Daniel Sarewitz, “CRISPR: Science Can’t Solve It,” Nature 522, no. 7557 (June 25, 2015): 413, doi:10.1038/522413a.
 R. Alta Charo, “Yellow Lights for Emerging Technologies,” Science 349, no. 6246 (July 24, 2015): 384–85, doi:10.1126/science.aab3885.
 Jim Kozubek, “The Public Should Have a Say in Allowing Modification of Our Germline Genetic Code,” Scientific American, accessed June 21, 2017, https://blogs.scientificamerican.com/guest-blog/the-public-should-have-a-say-in-allowing-modification-of-our-germline-genetic-code/.
 Juengst, “Crowdsourcing the Moral Limits of Human Gene Editing?”
[viii] Eric T. Juengst, “Crowdsourcing the Moral Limits of Human Gene Editing?,” Hastings Center Report 47, no. 3 (May 1, 2017): 15–23, doi:10.1002/hast.701.