Assessing Public Opinion on Genetic Technologies
The British Royal Society released its Report on Genetic Technologies on March 7th. Two weeks later, Nature published an Editorial titled “How to get public engagement right” and two substantial articles: “Rethink public engagement for gene editing” by Simon Burall, and “A global observatory for gene editing” by Sheila Jasanoff and J. Benjamin Hurlbut.
The discussions in Nature are quite germane to the Royal Society Report, although they are not responses to it. In fact, very few people seem to have noticed the Report at all. (None of my British colleagues had read it, and some had not heard of it when I asked for comment a week later.) Perhaps that’s just as well. The Report is the result of an expensive effort (over $200,000) that brought little clarity to the debates about applying these technologies. At best, it provides a rather thin overview of public opinion, based on what seems to be an optimistic presentation of the state of science.
The Report is worth discussing, however, if only because its methodology and approach could be improved. One problem is that the terms of reference were too broad. It is clear from the website, the press release, the choice of chair, and two commentaries, that specifically human applications were of the most interest to the Society. But the process focused equally on animals and plants, as well as humans; in the case of humans, the questions referred to possibilities in the next 10 years.
The investigation involved three focus groups — one for plants, one for animals, one for humans. Each group had 25–30 members, selected to be roughly representative of the population, and met twice. The first meeting was for an informational evening and the second, three weeks later, for an all-day session. Some hypothetical “case studies” were presented for discussion, and other materials did reference concerned civil society groups such as Human Genetics Alert. Experts were also available to answer questions. Shortly after the group meetings, a national on-line survey of 2,061 representative adults was conducted, which partially confirmed the attitudes of the focus groups.
The Royal Society press release headline was: “UK public cautiously optimistic about genetic technologies.” That’s not a big surprise, nor is it unfair; but the Guardian headline, for instance, was rather more tendentious: “Britons in favour of editing genes to correct inherited diseases.” That’s somewhat unclear: if a patient had inherited a harmful genetic abnormality, correcting it (if possible) would not be controversial. But the headline presumably refers to support of germline intervention, and that would be overstating the documented results.
That conclusion seems mostly to be based on the survey, in which a series of questions about specific serious ailments served in practice to blur the line between somatic and germline interventions. That set-up clearly encouraged increased support for heritable gene editing, to the point of the “very dramatic result” (absurd would be a better word) that support for editing declined when it was specified that the change would not be inherited. [Appendix 8, p. 65] That question, in what is surely no coincidence, was the only one that did not specify a horrible disease.
The report itself acknowledges that the survey “demonstrated a somewhat different finding” than the members of the focus group, who were much more cautious. They found it “important to explore all alternative options before going down the route of genome editing of human embryos.” [Report, p. 66] Many saw the prospect of germline interventions as “both an opportunity and a threat” and a major concern was the lack of consent on the part of the resulting children. [Report, pp. 58, 65]
Materials supplied to the focus group imply that genome editing of human embryos is technically close at hand, or at least within the ten-year time frame specified. That seems optimistic for (to quote the survey) “curing” muscular dystrophy, leukemia or arthritis, let alone “hypertrophic cardiomyopathy, which may result in heart failure.” [Appendix 8, pp. 64–65.]
The case study does mention that years of safety tests lie ahead, and that it is currently illegal in the UK, US and “many other countries” to implant a genetically altered embryo into a woman’s womb, though participants noted that Brexit might confuse the legal issues. It also downplays the potential for pre-implantation genetic diagnosis to avert the need for germline intervention, a shortcoming frequently seen in media coverage and other discussions of germline editing — and one that would seem to significantly skew reactions.
Some other items of interest did arise from the discussions, notably a serious concern about lessening inequality. Focus group members were sensitive to costs of treatment both for individuals and for society at large. There was also a wide-ranging suspicion of people or corporations with a financial interest in promoting genetic technologies.
Overall, the most substantial conclusion to be drawn from this process may be that the public as a whole needs space and time in which to discuss the issues, and is not monolithic. People may disagree, but at the same time share a definite moral compass with which to make decisions. Some experts may conclude from this Report that the public is behind them, both in the sense of support and in the sense of catching up. It may be more accurate to say that the public is ahead of them.
It is heartening, therefore, to see in Nature the calls by Simon Burall, Sheila Jasanoff and J. Benjamin Hurlbut to rethink methods of public engagement for gene editing. Burall stresses that the public is by no means an “undifferentiated mass” and generally consists of many partially interlinked networks. Crucially, he advocates investing substantial amounts of time and money into a wide-ranging series of different types of public engagement. Not to impose decisions, but rather to evolve them.
Perhaps the Royal Society Report should best be seen as a tentative, sometimes stumbling, early attempt in this direction. Especially at this stage of scientific and technological development, it seems premature to draw oversimplified conclusions about what “the public” is ready to support.