2nd ELSI Conference:Mainstreaming Ethics Alongside Genomics in Rare Disease

The ELSI Node invites you to share experiences, cases and insights on the Ethical, Legal & Social Issues (ELSI) surrounding rare conditions. The ELSI Node invites you to share experiences, cases and insights on the Ethical, Legal & Social Issues (ELSI) surrounding rare conditions. The ELSI Node is pleased to invite researchers, healthcare professionals, policymakers and patient support groups to share experiences, cases and insights on the Ethical, Legal and Social Issues (ELSI) surrounding rare conditions at the 2nd ELSI Conference, hosted at Cardiff University, UK. This free one-day conference will explore the ethical, legal and social issues surrounding rare disease research and clinical practice, with a particular focus on Mainstreaming Ethics Alongside Genomics in Rare Disease Research and Clinical Practice. The conference will bring together speakers and delegates from across the Rare Disease Research UK community, the ELSI Node Partnership and the wider rare disease and genomics community. 2nd ELSI Conference Programme Highlights Include. Copy the URL below to view the draft programme in full: https://www.mrcc.org.uk/wp-content/uploads/2026/08/ELSI_Conference_2026_Programme_Cardiff-UK_19.11.26.pdf ELSI Node Research Updates Research updates from across the ELSI Node Partnership, including work led by The University of Manchester, The University of Oxford and Cardiff University, exploring current progress and experiences within the ELSI programme. Talking Genomics – Keynote Speaker Presentations Join three leading experts in genomics, sociology and ethics as they explore some of the most pressing challenges arising from the integration of genomic medicine into routine healthcare. This special keynote session will examine professional decision-making around ambiguous genomic results, the realities of genomic diagnostics in practice, and approaches to consent and the return of whole genome sequencing results within clinical settings. Keynote Presentations From: • Prof. Adam Hedgecoe – Director, Wales Institute of Social and Economic Research and Data (WISERD) Professional decision making around ambiguous genomic results • Dr Janneke Kuiper – Postdoctoral Fellow, Centre for Sociological Research, KU Leuven, Belgium Shaping genomic care: navigating the complexities of genomic diagnostics in practice • Dr Celine Lewis – Principal Research Fellow in Genomics, UCL Great Ormond Street Institute of Child Health Consenting and returning results for whole genome sequencing: What do these conversations look like in a clinical setting? Clinical Training and Mainstreaming Specialties Workshop Highly interactive workshop chaired by Prof. Marcus Longley, bringing together delegates from across research, healthcare and policy to discuss the future of genomics education and implementation. The workshop will consider areas including orientation to training, incorporating patient and public voices, supporting Specialty Training Committees across different clinical specialties, and the wider European context. Perspectives on Mainstreaming Genomics Morning sessions bringing together researchers, clinicians and patient representatives to explore the opportunities and challenges associated with mainstreaming genomics across healthcare systems. Delegates will hear perspectives from Wales, Sheffield and Genomics Partnership Wales, covering patient experiences, implementation challenges, service development, and the realities of embedding genomic medicine into everyday practice. • Dr Joanne Thomas – Genomics Researcher and Registered Nurse, University of South Wales Mainstreaming genomics: where are we going, and how do we get there? • Dr Alisdair McNeill – Senior Clinical Lecturer in Neurogenetics, University of Sheffield Challenges of mainstreaming genome sequencing for adult neurodegenerative disease PPIE Perspectives A dedicated session exploring PPIE perspectives from Genomics Partnership Wales, focussing in on patient perspectives and lived experience, supporting patients beyond diagnosis, demonstrating the impact of patient involvement, and approaches to communicating the opportunities and limitations of genomic medicine. About the ELSI Node The ELSI Node is part of the Rare Disease Research UK Network and focuses on the ethical, legal and social implications of rare disease research and genomic medicine. Further information about ELSI can be found at: https://rd-research.org.uk/node/elsi/ Please note that we are unable to cover costs for travel, accommodation and subsistence for delegates attending this event