What’s the use of the UK Citizens jury on human embryo editing?

22 September 2024 shrese Articles 0

[UNIVERSITY ESSAY – 1000 words]

For decades, the development and implementation of biotechnologies, like the announcement in 2018 of the first genetically modified human babies (Greely 2019), have sparked fierce debates. Central to these controversies is the issue of regulation and policy: should these technologies be allowed? How should they be regulated? And on what basis, what kind of evidence, should these decisions be taken?

To illustrate this last point about evidence and policy-making, I focus on the UK Citizens jury on human embryo editing (UKCJ) held in 2022 (WCS 2022) and interrogate its impact. Addressing the issue of human genetic manipulation (HGM), the UKCJ is an example of the turn to public engagement with science (PES) that tries to promote a better involvement of the publics1 in decision about science (Irwin 2015).

This account is reflective in two ways. First, because the UKCJ reveals the complex relationship between PES and policy-making: do PES outcomes contribute directly to decision-making, according to the evidence-based policy model, or is their role more informative (Young et al. 2002)? What come first, science issues that need solving, or policy solutions looking for issues (Cohen et al. 1972)? Second, because I am personally involved in NGOs’ campaigns against HGM.

The UKCJ

Last year, The American journal of bioethics published a special issue where a target article debating PES around HGM (Conley et al. 2023) was discussed in several contributions. One drew from the experience of the UKCJ to evaluate “whether [PES] can legitimately claim to be advancing equity or influencing policy” (Milne et al. 2023). To this question, Conley and colleagues had replied by the negative.

The UKCJ gathered 21 jurors, members of the public affected by the very genetic conditions that HGM could potentially ‘cure’. The jury voted in favour of asking the government to change the law to allow HGM in some specific cases and with extremely strict regulations, and produced a set of policy recommendations (WCS 2022).

The jurors themselves thought that, realistically, the impact of their work on policy would be reduced. Indeed, the UKCJ “was not commissioned by decision-making bodies like regulatory agencies or Parliament, and so a direct response from decision-makers was not expected” (Curato et al. 2022, p.21). Milne et al. argued that the UKCJ’s role was actually not so much influencing policy than building “democratic capacity” and contributing to “value debates” (Milne et al. 2023), joining the call to steer away from the idea of evidence-based policy to go towards building an “evidence-informed society”, where the role of PES, as well as social sciences, would be to illuminate and inform policy-makers as best as possible rather than participate actively in decision-making (Young et al. 2002).

However, if the role of PES initiatives is not to influence policy-making, how can the publics ever hope to shape decisions about science and technologies? How can civil organisations like the one I am part of be able to successfully push for a ban on HGM?

Impact on policy?

Concerning HGM in the UK, the relevant policy-making body is the Human Fertilisation and Embryology Authority (HFEA). The HFEA is currently working towards a revision of the UK fertility law and ran a public consultation, another form of PES, in 2023. The question for HGM stakeholders (scientists/clinicians, entrepreneurs, NGOs, the publics etc.) then becomes: how can the HFEA be influenced? Specifically, does evidence produced by PES count?

The UKCJ organisers claim that their final report will be a “useful resource for policy-makers” or that a “briefing is … being prepared for policy-makers” (WCS 2022, pp.14, 55). However, the briefing is still not available and it is not known if or to whom the jury’s results were communicated.

Other spaces where stakeholders contribute to the HGM debate are the International summits on human genome editing – the third one took place in London in March 2023. There was no direct public participation to the HGM debate at this summit, only a session where academics discussed HGM’s PES initiatives – contrasting with the time allocated to the testimony of a single person treated with a new genetic therapy (ISHGE 2023). Genetic therapies are not part of the HGM debate per se, but this illustrates how some similar kinds of evidence (lay and experience-based evidence like this testimony or the UKCJ) are not given the same importance and legitimacy in spaces very influential in policy-making.

Nevertheless, the results of the UKCJ were timely reported in the media, a few days before the international summit for more impact, underlying its support for a law change to allow HGM (The Guardian 2023) while overlooking its nuanced and complex debates/recommendations (CGS 2023).

Future-proofing policies

In November 2023, following their consultation, the HFEA published its recommendations (HFEA 2023a). The main policy proposal is a ‘future-proofing’ approach. Future-proofing promotes “resilient” policies that can “withstand a range of [future] shocks” (EPRS 2021).

For the HFEA, this implies that future regulations should not be subjected to full parliamentary scrutiny, allowing more flexibility. The main ‘shock’ that this ‘future-proofing’ would protect the potential approval of HGM from is public resistance (cf. The GMO controversies in the 1990s), an illustration of the garbage can model where an already available solution (future-proofing) looked for a problem (controversial biotechnologies) to solve (Cohen et al. 1972). For some NGOs, the idea of ‘future-proofing’ contribute to “make [HGM] seem inevitable” (CGS 2022), but it also risks minimizing even more the impact of the publics’ voices on policy-making.

Moreover, 80% of the members of the public who participated in the HFEA consultation disagreed with the HFEA proposal (HFEA 2023b Figure 19). This illustrates a common lack of accountability in PES, where the results of the participation of the public end up not being reflected in the output (Iltis et al. 2021). Even when accountability is ensured, this does not guarantee the implementation of the recommendations. The French Citizen’s Convention on Climate is an example of a rich deliberative PES initiative whose numerous policy recommendations were ultimately rejected (Galván Labrador and Zografos 2023).

Any hope for PES?

This account illustrates the difficulties for certain kind of evidence to actually influence policy-making: reducing PES outcomes to informing debates (Young et al. 2002; Milne et al. 2023) and policies starting from the solutions (future-proofing) rather than the problems (Cohen et al. 1972; HFEA 2023a). This echoes not only Conley et al.’s conclusions (Conley et al. 2023) but also the critiques of other scholars for whom the discourse of engagement is essentially rhetorical (Weingart et al. 2021) and participatory initiatives are not giving true democratic decision power to the public over science policies (Irwin et al. 2013).

References

  • CGS, Center for Genetics and Society. 2022. A Campaign to Legalize Heritable Genome Editing in the UK? Available at: https://www.geneticsandsociety.org/biopolitical-times/campaign-legalize-heritable-genome-editing-uk [Accessed: 13 May 2024].
  • CGS, Center for Genetics and Society. 2023. The UK Campaign to Legalize Germline Gene Editing. Available at: https://www.geneticsandsociety.org/biopolitical-times/uk-campaign-legalize-germline-gene-editing [Accessed: 13 September 2023].
  • Cohen, M.D., March, J.G. and Olsen, J.P. 1972. A Garbage Can Model of Organizational Choice. Administrative Science Quarterly 17(1), pp. 1–25. doi: 10.2307/2392088.
  • 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.
  • Curato, N., Parry, L.J. and van Dijk, L. 2022. UKCJ: 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.
  • EPRS, European Parliamentary Research Service. 2021. ‘Future proofing’ EU policies. Available at: https://www.europarl.europa.eu/RegData/etudes/BRIE/2021/694209/EPRS_BRI(2021)694209_EN.pdf [Accessed: 13 May 2024].
  • Galván Labrador, A. and Zografos, C. 2023. Empowerment and disempowerment in climate assemblies: The French citizens’ convention on climate. Environmental Policy and Governance. doi: 10.1002/eet.2093.
  • 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.
  • HFEA, Human Fertilisation and Embryology Authority. 2023a. Modernising fertility law. Available at: https://www.hfea.gov.uk/about-us/modernising-the-regulation-of-fertility-treatment-and-research-involving-human-embryos/modernising-fertility-law/ [Accessed: 14 May 2024].
  • HFEA,Human Fertilisation and Embryology Authority. 2023b. Overview of HFEA public consultation on law reform 2023. Available at: https://www.hfea.gov.uk/about-us/modernising-the-regulation-of-fertility-treatment-and-research-involving-human-embryos/overview-of-hfea-public-consultation-on-law-reform-2023/ [Accessed: 14 May 2024].
  • Iltis, A.S., Hoover, S. and Matthews, K.R.W. 2021. Public and Stakeholder Engagement in Developing Human Heritable Genome Editing Policies: What Does it Mean and What Should it Mean? Frontiers in Political Science 3, p. 730869. doi: 10.3389/fpos.2021.730869.
  • Irwin, A. 2015. Science, Public Engagement with. In: International Encyclopedia of the Social & Behavioral Sciences. Elsevier, pp. 255–260. Available at: https://linkinghub.elsevier.com/retrieve/pii/B9780080970868850552 [Accessed: 2 January 2024].
  • 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, National Academies of Sciences, Engineering, and Medicine. 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.
  • 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].
  • WCS, Wellcome Connecting Science. 2022. UKCJ: 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.
  • Weingart, P., Joubert, M. and Connoway, K. 2021. Public engagement with science—Origins, motives and impact in academic literature and science policy. Muscio, A. ed. PLOS ONE 16(7), p. e0254201. doi: 10.1371/journal.pone.0254201.
  • Young, K., Ashby, D., Boaz, A. and Grayson, L. 2002. Social Science and the Evidence-based Policy Movement. Social Policy and Society 1(3), pp. 215–224. doi: 10.1017/S1474746402003068.

1 The plural form is used to emphasize the heterogeneity of the ‘public’.