This is what the public thinks about genome editing

At a time when genome-editing technology is still in its infancy, and its uses are yet to be determined, the voices of patients and patients’ carers, and those with disabilities, need to be heard.

Lara Marks Silvia Camporesi Jonathan Lind
18 March 2016
Four-cell human embryo. Wellcome Images. All rights reserved.

Four-cell human embryo. Wellcome Images. All rights reserved.One of the key recommendations made by the Washington DC Genome Editing Summit, held last December, was "not to stop the conversation" and called for an ongoing international debate about which 'genome-edited futures' we want. This, it said, should “not only occur among biomedical scientists, but also among policy-makers, regulators, research funders and industry representatives, as well as healthcare providers, patients and their families, people with disabilities, ethicists, lawyers, social scientists, faith leaders, public interest advocates, and members of the general public." 

We have taken up the mantle of engaging as wide a public in the debate as possible by launching a self-funded pilot survey online to gauge what people think genome editing is, what it can do, and what significant ethical issues they think it poses. The survey is hosted on WhatIsBiotechnology.org, a website that gets over 1,000 page views a day from a diverse set of people from all over the world. We also invited people to participate in the survey through openDemocracy, The Conversation, The Huffington Post, Nature and BioNews, as well as through Twitter.

Launched in late October 2015, the survey asks respondents to log the degree to which they agree or disagree with seven statements, covering issues from government regulation and industry involvement to the ethics of genome editing. These could be ticked from 1 for "very strongly disagree" to 7 for "very strongly agree". Respondents were also given the opportunity to write open comments to four questions and to list key words that they associate with genome editing. So far, 359 people from around the world have completed the survey. Two-thirds of these respondents were from the United States and the United Kingdom, evenly divided between the two countries. Of the other respondents, the majority were from other European countries (the highest numbers being from Germany and France), with the remaining coming from other locations around the world or non-disclosed locations. A large proportion of the respondents indicated they were academic researchers and or had a general interest in the area.

Even at this early stage, the survey's results show patterns that warrant reflection. More than three quarters of respondents across all regions agreed with the statement that "there is a reasonable chance that genome editing will be useful in addressing health needs of patients in the next few years." There appeared to be no real differences across UK, Europe and the US, although 13% of UK respondents disagreed compared to only 7% in the US. The strength of feeling on this matter was strongest among US respondents and those from countries other than Europe and the UK, with 78% of US respondents and 79% of those from elsewhere selecting the "strongly" and "very strongly agree" rankings in answer to the question. By contrast it was 59% for UK respondents and 57% for European respondents.

More than three-quarters of respondents across all regions agreed with the statement that "there is a reasonable chance that genome editing will be useful in addressing health needs of patients in the next few years."

Over two-thirds of all respondents, from all areas, also agreed with the statement, "the use of genome editing technology poses significant ethical issues in terms of altering the human genome". Some idea of how people felt about this issue is reflected in the fact that one of the most popular keywords they used to describe genome editing was "eugenics". The dominance of this word is not surprising given the prevalent use of the term by the media in their coverage of genome editing.

Noticeably fewer respondents based in the US (55%) agreed with the statement that genome editing posed significant ethical issues in altering the human genome than those in the UK (73%), Europe (73%) and elsewhere (66%). Yet, nearly twice as many US respondents (30%) compared to UK respondents (15%) disagreed with the statement. This is rather curious given the differing policies being pursued in each country. Federal funds, for example, have been banned in the US for any research that involves the editing of human embryos, although the State of California is considering funding it with state funds, and others in the US may follow. The result is of particular significance in the UK, where the regulatory authority, the Human Fertilisation and Embryo Authority (HFEA), recently approved an application to use the CRISPR/Cas9 gene editing technique to study the development of the human embryo.

When able to write open comments, respondents’ views about editing the human embryo were mixed. While some expressed caution, others were enthusiastic. One UK respondent seemed to evoke implicitly the spectrum of eugenics when he wrote, “possibly adverse irreversible effects in the resultant individual (and subsequent generations) infringe on the rights of those with disabilities (seen as a lower class and pressure put on to eradicate).” Another wrote: “The most prevalent issue I see is defining what qualifies as a disability, both in terms of overall diseases and on a case by case basis in reference to a patient's severity of symptoms”. However, there were also enthusiastic voices. As one Australian respondent, who classified themselves as a patient, wrote, “people will complain about embryonic gene editing in humans. But really, I wish my genes had been edited when I was an embryo to prevent various health problems that I now experience and are getting worse with age.” Such an endorsing statement echoes that of patient groups at the US summit in December. It also underlines the importance of including patients’ voices in the discussion, as highlighted in a piece published in Nature, and highlights what may be a growing impatience with discussion from those who could stand to benefit from clinical applications of gene editing technology.

Another interesting pattern that emerged from the data was the fact that European respondents (58%) were much more supportive of greater government regulation of genome editing than those in the UK (45%), the US (48%) and elsewhere (58%). UK respondents also showed a greater tendency to be neutral (28%) on the issue than those in the US (17%) and Europe (14%). Perhaps one explanation for this neutral tendency is the UK's long-standing regulation for fertility treatment and embryo research (the HFEA has been in place since 1990), and people in the UK feel that this is already a good balance.

European respondents (58%) were much more supportive of greater government regulation of genome editing than those in the UK (45%), the US (48%) and elsewhere (58%).

Overall, respondents broadly agreed that industry should support the development of genome editing technology, with the strongest support amongst US respondents. UK respondents were the most sceptical about industry support for genome editing (they are still supportive overall, 56%). This compares with the US but the net result is the lowest across all respondents, with 56% being in favour, compared to the US where 72% of respondents were supportive of industry. How do we interpret this? One explanation could be that there is more scepticism of industrial involvement in the UK because of the long tradition of the National Health Service, whereas the US healthcare system is more open to industrial involvement. However, the scepticism is not confined to the UK; one Canadian respondent was very critical of industry support for genome editing, stating, “when this technology falls into that hands of big pharma or corporate industry, it runs the risk of abuse.”

Another perspective on industry support was given by a US academic researcher with links to charity and policy-making who pointed out how, in the context of scarce resources, the allocation of huge investments to "genome editing seems like a waste of money compared to funding universal healthcare efforts. We attribute too many environmental factors to our genes in order to come up with 'precision medicine', but we could just solve the environmental factors first and see what's left for genetics to deal with after raising the floor of human health and well-being for millions."

European participants agreed most strongly with the statement, “the use of genome editing technology poses significant ethical issues in terms of safety to the environment,” with 54% agreeing with the statement. At least 40% of European respondents indicated very strong agreement with the statement. Those based in the UK, the US and elsewhere also agreed that genome editing posed problems for the environment, being respectively 44%, 48% and 44%. Yet the sentiment was less strong. At least 39% of the respondents in the US and 30% or more of those respondents from the UK, Europe and elsewhere disagreed with the statement.

The trend in responses to the environment question might be due to a variety of reasons. It may reflect the fact that fewer people have made the connection with the environment because fewer media stories have been published on the environmental impact of genome editing. As we have written before, the debate around genome editing has focused mainly on human health and embryo research applications. This narrow focus risks crowding out equally important concerns about the environment and possible misuse of the technology as a bioweapon. The Nuffield Council on Bioethics is itself now considering prioritising the study of both the good and bad uses of research, including genome editing as a topic for a report.

To the question, “I feel fully informed about the issues surrounding this technology,” US respondents, by a large margin, felt that they were (75% agree versus 16% disagree). By contrast, only 54% of respondents from the UK and 52% from Europe agreed that they felt fully informed. This result may partly be down to the recent international summit (held in the US). What it suggests, however, is that much more work needs to be done to engage and inform people on the issues surrounding genome editing. We could not agree more with the response of one UK academic researcher with links to charity who stressed the importance of "informed, non-sensationalised journalism so that the public are clear about the benefits and potential limitations of this technology.”

This is paramount at a time when genome-editing technology is still in its infancy and its uses are yet to be determined, and important for any debate considering whether the applications of the technology are desirable, and for whom. The voices of patients and patients’ carers, and those with disabilities, need to be heard. The 'open call' to continue the conversation in an inclusive manner creates a shared responsibility to explore possible futures. 

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