Conference Report: Genethics Forum 2023

With the support of the Institute of Medical Ethics (IME) early career researcher conference grant, I was able to attend a September meeting of the Genethics Forum, which is a discussion forum for health professionals and other interested parties to come together and consider challenging ethical and legal issues surfacing in genetic medicine, with a particular focus on clinical practice.
As a researcher with a background in AI governance and emerging interest in bioethics, I attended the Genethics Forum with the intention of learning more about genetic ethics and policy in practice. I had conducted preliminary reading and literature scoping on a potential project on AI and genomics in my current role as a Research Associate at the University of Bristol; however, academic research can at times feel lacking in its engagement with ‘on-the-ground’ issues and with the experiences of clinicians in context. The Forum proved to be an illuminating experience which met my expectations of providing insight into the clinical experience of genetic ethics.
The Forum commenced with a plenary session on the Newborn Genomes Programme at Genomics England. It was exciting to hear about such a novel research programme which would have the potential to diagnose and intervene in medical conditions at much earlier stages, through the help of genomic medicine.
Much of the rest of the day was devoted to discussing clinical ethics cases in genetics in great detail, with clinicians presenting cases and facilitating nuanced discussion around the room. Issues surrounding informed consent, particularly the ongoing process of consent, the right not to know and incidental findings, participant and patient understanding of the implications of consent, and trade-offs between participant autonomy and clinician discretion and paternalism were themes that came up frequently during the discussion.
Although informed consent may seem like a straightforward, compliance-oriented exercise to the layperson, the Forum discussions made clear that obtaining and maintaining informed consent, particularly for genomic research which may have unforseen findings and consequences for individuals beyond the consenting research participant, is not at all a simple process and involves complicated normative trade-offs.
I was grateful to be given the opportunity to attend the session and learned a lot from the pragmatic and expert judgments of the clinicians involved. I certainly learned the nuances of clinical decision-making in a way that academic literature would struggle to provide. Hearing clinicians reason in real time was illuminating and informative.