The Arts of Polling
When considering whether and how to proceed with regulating human germline gene editing, everyone supports public engagement. The National Academies of Sciences, Engineering, and Medicine (NAS), the Nuffield Council on Bioethics, and the Center for Genetics and Society (CGS) all recommend a robust public debate. But no one really knows how to conduct one, and all too many efforts lay a heavy hand on one of the scales.
The first step would seem to involve asking and answering the superficially simple question, what does the public think about these issues? CGS has contributed to resolving this by collecting polling results dating back to 1986, in particular on inheritable genetic modification and reproductive cloning. They are tabulated here, in chronological order starting with the most recent. This is a substantial collection but undoubtedly not complete; please send additions to [email protected]
A few conclusions jump out from the data:
• Medical applications of gene editing are much more acceptable than enhancements.
• Opinion has remained remarkably stable over recent decades.
• The phrasing of the questions strongly influences the answers.
“Cures” are the domain not just of medical practitioners but of fundraisers (and quacks), and for good reason. Everyone is in favor of making sick people well. Some people would also like to be “enhanced” but more think of that as unacceptable; and almost 90% of the population are concerned that any benefits would primarily or entirely accrue to the rich.
Some disability activists are offended by the very concept of “cures” for their selves. Even fertility doctors who try to sell blue-eyed babies (which the public rejects by large margins) do not explicitly claim them as a “cure” for brown eyes, but the distinction between therapy and eugenic enhancement is blurred by such efforts.
A relatively clear and simple example is human reproductive cloning. The concept is well-understood and unambiguously rejected by the American public (and all others surveyed). The earliest poll we have, conducted for Time & CNN in late 1993, showed public opposition by 75–14; the most recent, by Gallup in May 2018, showed opposition by 81–16.
A few outliers have appeared to show shifts toward greater support for reproductive cloning. These were all from 2002–3, when embryonic stem cell research was becoming a political topic. The questions were concerned not with cloning itself but with a government ban on cloning. Support for a legal ban, according to Gallup, fell as low as 39–36 with 25% unsure, among half their sample, in April 2002; eliminating the “or are you unsure” part of the question for the other half changed the result to 53–40. However, the next month, Gallup registered 90–8 opposition to “cloning designed specifically to result in birth of a human being.”
Polling on germline interventions is somewhat less consistent, largely because of the effect of different states of technical knowledge and also varying wording of the questions, as discussed next. However, gene editing to change a baby’s eye or hair color, let alone “intelligence,” has been opposed in every poll for thirty years. That seems unlikely to change.
Phrasing: A Case study
Phrasing matters. It matters most when the concepts being polled are not widely and clearly understood. For instance, those most involved in the debates about human gene editing distinguish (or choose not to distinguish) between somatic and germline interventions. All but a rare few agree that somatic gene therapy is uncontroversial; the élite debate focuses entirely on germline editing.
But a poll conducted for the UK Royal Society in November 2017 showed that somatic gene editing was less supported than germline. How can this be? Well, here are the questions, which ask whether the development in question “can be seen as positive or negative for society”:
- Using genome editing to correct a genetic disorder so that the correction would also be inherited by any children of that person (e.g. in case of hypertrophic cardiomyopathy, which may result in heart failure):
very positive: 43%
to some extent positive: 33%
to some extent negative: 10%
very negative: 4%
don’t know: 10%
- Using genome editing to correct a genetic disorder in a way that would not be inherited by any children of that person
very positive: 32%
to some extent positive: 39%
to some extent negative: 13%
very negative: 4%
don’t know: 11%
So 71% of people support somatic gene editing, but 76% support germline!
Phrasing (and ordering) the questions in this way increases support for germline. This, of course, is cheating; in politics, especially, this practice is called the use of “push polls.” The first scenario not only gives as an example a relatively common disease, it uses the scary official name and explains it with the even more alarming “heart failure.” That’s one thumb on the scale. The scenario also completely glosses over the fact that unless gametes or embryos are altered, any gene therapy would not be inherited; it is not discussing a cure for a person, merely a theoretical preventive measure. That’s two thumbs on the scale. And there is no “gene for hypertrophic cardiomyopathy,” which seems to have multiple genetic causes, not all of which have been identified. Leaning heavily on the scale by now.
The second scenario is presented as if it were a cop-out: the selfish patient won’t save his or her children. By this point, the whole torso is leaning in and disturbing the balance.
An Historical Sidelight
Matthew Nisbet, now Professor of Communication Studies at Northeastern University, highlighted an amusing fact from 2001: Two opinion polls conducted within three weeks of each other registered diametrically opposite views on federal funding for embryonic stem cell research. One, conducted for the National Council of Catholic Bishops, demonstrated 70% public opposition. The other, sponsored by the Juvenile Diabetes Research Foundation, showed 65% support.
As you would expect, the questions were somewhat differently phrased.
The lesson from this tale is that it’s always worth looking closely at opinion polls (on any topic) before taking them as simply reflecting what the public thinks.
The most recent, thorough polling in the U.S. was conducted by the Pew Research Center in April and May, 2018. The headline Pew used was:
Public Views of Gene Editing for Babies Depend on How It Would Be Used
Americans are more likely to anticipate negative than positive effects from widespread use of gene-editing technology
Among the findings of that survey not repeated as often as they might be were that a clear majority (62%) think that “medical researchers” do not understand “the health risks and benefits of changing a baby’s genetic characteristics.” An even larger majority (87%) think that inequality will increase because these techniques “will be available only for the wealthy.” And 86% think that “even if gene editing is used appropriately in some cases, others will use these techniques in ways that are morally unacceptable.”
Any “broad societal consensus,” as required by the 2015 International Summit On Human Gene Editing Closing Statement, seems further away than many interested parties hope. Even the “public engagement” that the National Academies of Science recommended in 2017 may be more complicated than they suggest. Broadening the debate beyond the realm of academic experts is certainly essential. That difficult work remains ahead of us.