Public engagement is an essential ingredient in building public trust and confidence, when it comes to decisions about the use of science and technology. It is important to recognise that the ways in which scientists and policymakers depict the potential benefits and hazards of a new technology can influence public debate and its parameters. That is why it is important to engage the public in the debate about genome editing as early as possible, and in a way that is as open as possible, to make sure that all possible voices are included.
We, a historian of medicine and a bioethicist, are currently attempting to do this through an online pilot survey. The survey is designed to gauge what members of the public think about the new genome-editing technology and how it should be applied.
More than 200 people have already responded – most of them from the UK and the USA, but also from China and elsewhere – and the survey is still ongoing. Respondents have identified themselves as academics, research and medical professionals, lay people, patients, students, policy professionals and industry experts. Their feedback highlights many of the issues that matter to the public, which should be considered at the International Summit on Human Gene Editing in Washington DC.
The importance of such an exercise is highlighted by one participant, a UK student, who argues: 'Policy should come from the public, not enforced on the public. [It is] extremely important to have open and anonymous forums like this. The hyperbolic assertions of the media in these matters are often very unhelpful in ensuring that the first impression of the technology in the public is one of fear. There needs to be unbiased education led by the public – they ask the questions they want to know the answers to – in an open (and un-pressurised) discussion with the scientific community.'
The survey asks participants to indicate what words come to mind when questioned about genome editing. Many of the words they list ring familiar bells, such as 'eugenics', 'designer babies', 'cure' and 'hope'. To some extent this reflects the way in which the technology has been portrayed to date. However, some participants are also using words such as 'power', a concept which has received relatively little consideration in relation to the technology so far.
Our survey is only a pilot study of what people think of genome editing, but it is a powerful way to learn what the public are thinking about the technology and what ethical issues they feel are important to address.
Preliminary results are already showing some interesting patterns. A significant proportion of respondents favour government and industry support for CRISPR, and believe that the technology will address significant health needs of patients. Yet they also voice concern about potential risks for the human genome and the environment. Not many, however, feel the need for greater government regulation.
Why is this the case? Some participants highlight a technological 'catch-22' voicing scepticism about the value of regulation because of the difficulty of enforcing it worldwide. One UK academic researcher also points out: 'We cannot restrict a potentially "game changing" technology simply because "someone" may misuse it. They will anyway.'
This is an important point that highlights the difficulty of engaging with a technology such as CRISPR, whose effects on the ecosystem and the planet are very difficult to predict or to contain within state borders. But we cannot duck our responsibility to engage with such questions and to bring them out into the open. The potential impact of CRISPR on the biosystem and biosphere demands a global approach.
So far, much of the debate in the UK and USA has focused on the potential effects of editing the human genome in the embryo. Yet the potential effect of this technology on future human generations is in fact more limited and manageable than the potential impact of releasing CRISPR-edited insects or crops into the environment, which could have a much wider effect. That is why it is of utmost importance for the debate to move beyond its current narrow focus on editing human embryos, which in itself can be seen as a strategy to elicit particular responses of fear and hope among the public, and start engaging the public in a wider debate about other potential applications of CRISPR.
Another issue raised by some of the participants is the question of priority setting and allocation of scarce resources. As one UK medical professional puts it when asked about the potential benefits of the technology: 'Hard to say. There are so many issues that need tackling before this – global issues of poverty and avoidable diseases in childhood in developing world, inequality, climate change.' One Romanian student feels that 'the biggest controversy' caused by the technology is its 'potential to further the inequality of our society'. A relative of a patient points out that one of the key issues will be 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' - a point that has also been raised elsewhere.
We agree with a respondent who says that it may be impossible 'to get this genie back into the bottle'. But it may be, and should be, possible to get democratic public engagement in deciding what wishes to use with this genie. Such engagement should discuss what impact the technology could have on our society, and provide space to think through our values in terms of its applications. This can only be done based on questions in which the public has some input.
The Progress Educational Trust's public conference 'From Three-Person IVF to Genome Editing: The Science and Ethics of Engineering the Embryo' is taking place in central London on Wednesday 9 December 2015. Find out more here.