Benefits and limitations of public participation in decisions about science, the case of the Heritable human germline editing debate

[UNIVERSITY ESSAY – 2000 words]

A newly developed genetic engineering technology called CRISPR was used in 2018 to genetically modify human embryos leading to at least two live births (Greely 2019). Since then, society has had to face a dilemma: a rapidly evolving but still uncertain technology (Heritable human germline1 editing, or HHGE) could be used clinically to manipulate the DNA of human embryos to ‘correct’ genetic conditions, while raising considerable legal, social, ethical and political issues. How has the general public been involved in this process so far? In this essay, the case of HHGE is used to illustrate the benefits and limitations of public participation in decisions about science.

The Third Wave model

The Third wave of Science and technology studies programme, called the Studies of Expertise and Experience (Collins and Evans 2002), followed decades of science studies which challenged the ‘technocratic’ model of decision making about science and technologies, where only scientists (the certified experts) are allowed to take part in the debates while the public has hardly any influence over the decisions (Wynne 1992; Epstein 1995; Irwin 1995). For Collins and Evans (C&E hereafter), this raised the Problem of legitimacy (who are the legitimate experts that can debate and take part in decisions about science?) and its corollary, the Problem of extension: if, according to social scientists, expertise is to be extended beyond the certified kind, how far should this go? To solve the extension problem, especially in situations where the science is still not settled but a political decision needs to be made (as with HHGE), C&E proposed the separation of the decision making process in two phases, technical and political, and a typology of expertise (Collins and Evans 2002). The technical phase is when the content and the state of the art of a science is discussed, and this should only involve specialist ‘experts’. The political phase is when decisions are made as to whether or not, and how to use the technology – this phase can/should include any member of society. However, what C&E name specialist ‘experts’ differs from the technocratic model. Their new typology includes contributory experts (CEs, anyone who practices in and contributes to a given field, be they scientists or not), interactional experts (IEs, anyone who has gained sufficient practical knowledge of a field without contributing to it, be they scientists or not), and experience-based experts (EBEs, like members of the public affected by a medical condition who acquired technical expertise). This essay uses the Third Wave model to discuss public participation in the technical and political phases of the HHGE’s debate, highlighting issues of expertise, models of public engagement in science (PES) and framing.

HHGE‘s technical phase

The technical phase of the HHGE’s debate is particularly visible through the various reports on the science of Human genome editing (HGE, the umbrella scientific field that includes HHGE), issued by international organisations and science academies, and the three International summits on human genome editing (ISHGE) in 2015, 2018 and 2023. Most adopted strong language about the need for meaningful PES (see Almeida and Ranisch 2022). However, reports were mostly written by CEs and, while some included public consultations, these were deemed “unlikely to produce more just or equitable processes or policy outcomes” (Conley et al. 2023).

The summits have included CEs (researchers, clinicians), IEs (bioethicists, philosophers, social scientists), and some EBEs (ISHGE 2016; ISHGE 2019; ISHGE 2023). Given the current global legal landscape and the many restrictions on HHGE (Baylis et al. 2020), specific EBEs on HHGE hardly exist (apart from the 2018 genetically modified children mentioned). The EBEs who participated in the third ISHGE were a sickle cell anaemia patient treated with a novel CRISPR-based genetic therapy and representatives of patients’ organisations (ISHGE 2023), so their expertise was more on general HGE. Moreover, their interventions appeared to be a contribution to the political rather than to the technical phase: the patient mostly talked about her experience while the representatives mainly discussed equitable access to treatments (ISHGE 2023). The 2023 summit also included a session dedicated to PES initiatives around HHGE, presented by IEs2, but this did not contribute either to the technical phase. These examples resonate with the ‘oil and water’ analogy that C&E used to describe how the political and technical phases do and can happen simultaneously, but are still separate (Collins et al. 2010). Public input in the HHGE’s technical phase has therefore been very limited.

HHGE‘s political phase and the UK Citizens’ jury

Let us turn now to one of the many PES initiatives of the HHGE’s debate: the Global citizen assembly on genome editing (GCA) spearheaded by the University of Canberra to promote a “global public deliberation to explore the science and its implications” (Dryzek et al. 2020). Related to this, citizens juries at the national level were organised, for example in Australia (Nicol et al. 2022) and the UK (Wellcome Connecting Science 2022). Citizens juries are mini-public (a small group of jurors/citizens) processes that involve several days of in-depth learning and deliberation (Coote and Lenaghan 1997). The UK Citizens jury on human embryo editing (UKCJ), organised in 2022 by Wellcome Connecting Science and Involve UK, gathered 21 jurors for four days “to provide an insight into the perspectives of a group of patients with inherited genetic conditions3 on what they think about the benefits, risks and wider harms emerging from the application of embryo genome editing. Their recommendations support policy makers, researchers and wider civil society to better understand informed public perspectives.” (Wellcome Connecting Science 2022, p.4) The remit of the jury, decided beforehand by the organisers, was: “Are there any circumstances under which a UK Government should consider changing the law to allow intentional genome editing of human embryos for serious genetic conditions?”

Expertise

The jurors were selected initially as EBEs, on the basis of their direct experience (as patients or relatives) with inheritable genetic conditions, so as to amplify the voices of affected people who are often under-represented in debates about science. This excluded other kinds of citizens (creating a very specific version of the ‘public’) and meant that the jury was not representative of the UK population, illustrating known limitations of recruitment mechanisms in PES initiatives (Glasner and Dunkerley 1999; Müller et al. 2023). As part of the UKCJ, the jurors received a handbook (Wellcome Connecting Science and Involve 2022) and exchanged with a number of “expert-witnesses”4 about:

  • the science of heritable diseases, genetic screening, HGE and HHGE
  • the legal landscape of policies and regulations
  • the history of, and arguments for and against HHGE

Therefore, one UKCJ’s objective could be understood as producing IEs who would be more able to understand the content and process of HHGE’s science and build bridges between EBEs and CEs – Collins called them ‘special interactional experts’ (Collins 2011). Jurors also acquired meta-expertise, which allows members of the public to discriminate between who is a legitimate expert or not (Collins and Evans 2007). As one juror commented in a filmed follow up event, it is important “that the right knowledge is reaching people in the right way” (In our lifetime 2023, 01:19:53-01:19:58), echoing the Civic epistemology that C&E are calling for (Collins et al. 2020).

Knowledge and trust deficit

Some jurors insisted that the issue of knowledge was key: “I have gained so much insight, understanding … knowledge”, “there is problem with knowledge … of disseminating knowledge … and quite often it’s ill-informed knowledge”, “making sure that everyone has enough knowledge, ‘cause a little bit of knowledge is a dangerous thing” (In our lifetime 2023, respectively 00:55:19-00:55:29, 01:18:07-01:18:32, 01:26:37-01:26:45). This suggests that the decried ‘deficit of knowledge’ model may still be useful to understand the relation between science and society. The model was critiqued for assuming that public resistance to new technologies hinges on public ignorance, reinforcing the the lay/expert hierarchy and an idea of a value-free science that cannot be challenged (Irwin 1995). Scholars suggested that institutions have moved from the ‘deficit of knowledge’ to a ‘deficit of trust’ model, where what needs addressing is the public’s lack of trust in science and experts in general, therefore turning to PES to increase citizens’ participation in decisions about science (Felt 2007). In terms of outcome, the UKCJ’s organisers suggest the possibility to offer a patients’ voice into the official consultation to update the Human Fertility and Embryology Act that regulates reproductive technologies in the UK (Milne et al. 2023). Indeed, the UKCJ did not include any binding agreement with any governmental body that would have to take into account the jurors’ recommendations. This was more of an exercise of learning, deliberation and amplification of under-represented voices than a promotion of agency and decision-making power. Therefore, the UKCJ may not help to address the ‘deficit of trust’ problem.

Framing

The remit, the main question that the jury had to answer, was criticised by jurors who “challenged the framing of the question as being designed to deliver a positive response. They focussed on the inclusion of ‘any’ in relation to the circumstances in which a change should be considered and noted that this made it a very leading question that was difficult to say ‘no’ to” (Wellcome Connecting Science 2022, p.30).

Furthermore, the notion of serious genetic conditions, on which the justification of HHGE hinges, was heavily discussed by jurors and expert-witnesses: “In a discussion over the definition of a ‘serious condition’, one juror acknowledged that their condition would come under the current definition and that they might have a reduced lifespan. They asked the room, ‘does that seriousness reduce the value of my life?’” (Curato et al. 2022, p.19). Expert-witnesses coming from disability studies or disability rights activism challenged this notion of seriousness and its implication that a genetic condition necessarily meant a need for intervention5. Another expert-witness shared her recent research showing the gap between the perceived seriousness of genetic conditions in the context of clinical reproductive screenings and the generally positive lived experience of affected adults (Boardman and Clark 2022).

On the last day, the jurors agreed on 15 recommendations based on a set of 9 values (such as fairness, inclusivity and diversity, transparency etc.) that should be taken into account in the process of deliberating, deciding and implementing HHGE. The jury also took a vote on the remit and 17 jurors out of 21 agreed that the UK Government should consider changing the law to allow HHGE, mainly, as they explained, to reduce suffering as soon as possible (Wellcome Connecting Science 2022). However, at the follow up event, a juror explained that “scientists will run away with excitement in researching this … and they will not stop … We cannot afford to stop talking about this now and we cannot afford to wait. That’s why I voted so highly in favour, ‘cause the conversation has to be out in the public domain and it has to be incredibly well informed” (In our lifetime 2023, 00:57:19-00:58:00), then comparing the option of not having the conversation to the way scientists just went on producing the atomic bomb in secret without any public oversight. This challenges the relevance of the remit and the interpretation of the jury’s results, which were quickly interpreted by the press as a citizens’ urgent demand to the UK government to allow HHGE (The Guardian 2023) when it was also a call for deep, meaningful and inclusive public conversation to counter a tendency of science to plough ahead and leave society behind.

The three points above highlight one of the main limitations of PES. In his critic of C&E’s proposal, Wynne argued that the current crisis in science legitimacy did not hinge so much on the “propositional” nature of decisions (e.g., the centrality of the question of risks and benefits of HHGE), but on the actual framing of the debate, where what gets to count as a matter of concern can be overdetermined by scientists (Wynne 2003). This often results in a reductionist, constraining and universalising framing that reinforces authoritarian model of decision-making about science, that is at odd with complex and unpredictable real-life situations (Wynne 1992) and where “dominant actors have illegitimately excluded people from negotiating what the salient questions are in the first place” (Wynne 2003).

Conclusion

While clear benefits of PES initiatives have been identified using HHGE as an example (amplification of under-represented voices, inclusion of experience-based expertise, production of special interactional and meta expertise) limitations were also highlighted, mainly the lack of citizens’ input in the technical phase and the absence of real citizens’ decision power both in the framing of the debate and in the political phase. A reminder of Irwin’s comment that “PES studies regularly conclude that the issues put to the public are limited, that the actual involvement of the public is marginal and that institutional actors resist engagement by insisting that both science and innovation should remain unquestioned and beyond serious democratic control.” (Irwin et al. 2013)

References

  • Almeida, M. and Ranisch, R. 2022. Beyond safety: mapping the ethical debate on heritable genome editing interventions. Humanities and Social Sciences Communications 9(1), pp. 1–14. doi: 10.1057/s41599-022-01147-y.
  • Baylis, F., Darnovsky, M., Hasson, K. and Krahn, T.M. 2020. Human Germline and Heritable Genome Editing: The Global Policy Landscape. The CRISPR Journal 3(5), pp. 365–377. doi: 10.1089/crispr.2020.0082.
  • Boardman, F.K. and Clark, C.C. 2022. What is a ‘serious’ genetic condition? The perceptions of people living with genetic conditions. European Journal of Human Genetics 30(2), pp. 160–169. doi: 10.1038/s41431-021-00962-2.
  • Collins, H. 2011. Language and practice. Social Studies of Science 41(2), pp. 271–300. doi: 10.1177/0306312711399665.
  • Collins, H., Evans, R., Durant, D. and Weinel, M. 2020. Experts and the Will of the People: Society, Populism and Science. Cham: Springer International Publishing. Available at: http://link.springer.com/10.1007/978-3-030-26983-8 [Accessed: 30 October 2023].
  • Collins, H., Weinel, M. and Evans, R. 2010. The politics and policy of the Third Wave: new technologies and society. Critical Policy Studies 4(2), pp. 185–201. doi: 10.1080/19460171.2010.490642.
  • Collins, H.M. and Evans, R. 2002. The Third Wave of Science Studies: Studies of Expertise and Experience. Social Studies of Science 32(2), pp. 235–296. doi: 10.1177/0306312702032002003.
  • Collins, H.M. and Evans, R. 2007. Rethinking expertise. Chicago: University of Chicago Press.
  • Conley, J.M. et al. 2023. The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research. The American Journal of Bioethics 23(7), pp. 9–16. doi: 10.1080/15265161.2023.2207502.
  • Coote, A. and Lenaghan, J. 1997. Citizens’ juries: theory into practice. London: IPPR.
  • Curato, N., Parry, L.J. and van Dijk, L. 2022. Evaluation report on the UK citizens’ jury on human embryo editing. Available at: https://societyandethicsresearch.wellcomeconnectingscience.org/wp-content/uploads/2021/11/Evaluation-Report-UK-Citizens-Jury-on-Human-Embryo-Editing.pdf.
  • Dryzek, J.S. et al. 2020. Global citizen deliberation on genome editing. Science 369(6510), pp. 1435–1437. doi: 10.1126/science.abb5931.
  • Epstein, S. 1995. The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials. Science, Technology, & Human Values 20(4), pp. 408–437. doi: 10.1177/016224399502000402.
  • Felt, U. ed. 2007. Taking European knowledge society seriously: report of the Expert Group on Science and Governance to the Science, Economy and Society Directorate, Directorate-General for Research, European Commission. Luxembourg: Office for Official Publ. of the Europ. Communities.
  • Glasner, P. and Dunkerley, D. 1999. The new genetics, public involvement, and citizens’ juries: A welsh case study. Health, Risk & Society 1(3), pp. 313–324. doi: 10.1080/13698579908406320.
  • Greely, H.T. 2019. CRISPR’d babies: human germline genome editing in the ‘He Jiankui affair’*. Journal of Law and the Biosciences 6(1), pp. 111–183. doi: 10.1093/jlb/lsz010.
  • In our lifetime. 2023. Directed by Robarts L. [Video] Film premiere and call to action in the presence of the UK citizens’ jurors on human genome editing at The Arts Picturehouse, Cambridge. Available at: https://vimeo.com/894561670.
  • Irwin, A. 1995. Citizen science: a study of people, expertise, and sustainable development. London: Routledge.
  • Irwin, A., Jensen, T.E. and Jones, K.E. 2013. The good, the bad and the perfect: Criticizing engagement practice. Social Studies of Science 43(1), pp. 118–135. doi: 10.1177/0306312712462461.
  • ISHGE 2016: LaBarbera, A.R. 2016. Proceedings of the International Summit on Human Gene Editing: a global discussion-Washington, D.C., December 1-3, 2015. Journal of Assisted Reproduction and Genetics 33(9), pp. 1123–1127. doi: 10.1007/s10815-016-0753-x.
  • ISHGE 2019: National Academies of Sciences, Engineering, and Medicine; Policy and Global Affairs. 2019. Second International Summit on Human Genome Editing: Continuing the Global Discussion: Proceedings of a Workshop in Brief. Olson, S. ed. p. 25343. Available at: https://www.nap.edu/catalog/25343 [Accessed: 17 November 2023].
  • ISHGE 2023: National Academies of Sciences, Engineering, and Medicine; Policy and Global Affairs; Steve Olson, Rapporteur.. 2023. Third International Summit on Human Genome Editing: Expanding Capabilities, Participation, and Access: Proceedings of a Workshop—in Brief. Available at: http://www.ncbi.nlm.nih.gov/books/NBK593530/ [Accessed: 13 September 2023].
  • Milne, R. et al. 2023. What Difference Can Public Engagement in Genome Editing Make, and for Whom? The American Journal of Bioethics 23(7), pp. 58–60. doi: 10.1080/15265161.2023.2207545.
  • Müller, R., Clare, A. and Ruess, A.K. 2023. STS and Bioethics: Forging New Synergies for Exploring the Potentials and Pitfalls of Public Engagement with New Biotechnologies. The American Journal of Bioethics 23(7), pp. 72–74. doi: 10.1080/15265161.2023.2207505.
  • Nicol, D. et al. 2022. Genome editing : formulating an Australian community response: Report to decision makers, stakeholders, and members of the public. Australia: University of Tasmania.
  • The Guardian. 2023. UK government urged to consider changing law to allow gene editing of embryos. 4 March. Available at: https://www.theguardian.com/science/2023/mar/04/uk-government-urged-to-consider-changing-law-to-allow-gene-editing-of-embryos [Accessed: 27 November 2023].
  • Wellcome Connecting Science. 2022. Report of the UK Citizens Jury on Human Embryo Editing. 13th-16th September. Collated by Involve. Available at: https://societyandethicsresearch.wellcomeconnectingscience.org/wp-content/uploads/2021/11/Citizens-Jury-Embryo-Editing-Report-Final-2.pdf.
  • Wellcome Connecting Science and Involve. 2022. Handbook of the UK citizens’ jury on genome editing. Available at: https://societyandethicsresearch.wellcomeconnectingscience.org/wp-content/uploads/2021/11/UKCitizensJuryHandbook_20220830_website-version.pdf.
  • Wynne, B. 1992. Misunderstood misunderstanding: social identities and public uptake of science. Public Understanding of Science 1(3), pp. 281–304. doi: 10.1088/0963-6625/1/3/004.
  • Wynne, B. 2003. Seasick on the Third Wave? Subverting the Hegemony of Propositionalism: Response to Collins & Evans (2002). Social Studies of Science 33(3), pp. 401–417. doi: 10.1177/03063127030333005.

1 The germline is the sexual cells: spermatozoa and eggs. With HHGE, unlike genetic therapy, the DNA modification involves all the cells of the body (including the germline) and is therefore heritable.

2 https://royalsociety.org/-/media/events/2023/03/human-genome-editing-summit/third-international-summit-on-human-genome-editing-programme-booklet.pdf?la=en-GB&hash=16DB894FBD02A549B2F090D575C3E92D

3 Most jurors were actually relatives of affected individuals.

4 See https://societyandethicsresearch.wellcomeconnectingscience.org/citizens-jury-expert-talks/

5 See Scully and Fox interventions in https://societyandethicsresearch.wellcomeconnectingscience.org/citizens-jury-expert-talks/