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PFGS Regional Meeting Oxford: Report

28 June 2012

On 8 June 2012, the Postgraduate Forum on Genetics and Society (PFGS) hosted a regional meeting at the University of Oxford on ‘Emerging themes in clinical genethics’, organised by PhD student Caroline Huang and the Ethox Centre at Oxford. The event brought together postgraduate students from Oxford, Leeds, Cardiff, Durham, London, and Newcastle for a day of informal research discussions and ethical debates.

After morning coffee and introductions, Professor Mike Parker, who serves as Director of the Ethox Centre, gave a short talk on the Genethics Club. The Genethics Club is a national forum bringing together health professionals interested in the ethical issues that arise in clinical genetics practice; part of Professor Parker’s role as facilitator is to create a space where attendees can present difficult cases, share their own related clinical experiences and reflections on the presented cases, and ultimately refine their own ethical viewpoints. The PFGS offers a similar space for thought: regional meetings bring together postgraduate students and early career researchers with interests in bioscience and society, offering them a supportive space where they can present various stages of academic work, bounce ideas off of each other, and leave with new directions or research perspectives to explore.

With this setting in mind, the rest of the day focussed on PhD presentations around the theme of research developed in or applied to clinical settings. The first PhD session covered ‘Identity issues and the right not to know’. Lorraine Cowley, who recently finished her PhD at Newcastle University, presented on ‘Moral tales of genetic testing in Lynch Syndrome (LS)’. She explained how members of a large extended family who accepted LS testing repeatedly called family members who declined testing ‘ostriches’ by family members who accepted testing, in reference to their desire to bury their heads in the sand and not find out their status, and framed this in relation to the anthropological idea of ‘biological citizenship’.  Stevienna de Saille of Leeds then led a discussion on ‘Reconstructing biological identity and the right to or not to know’ through the presentation of cases of genetic disease in donor-conceived people. Needless to say, the topic elicited strong responses on the responsibilities of donor banks, and the appropriateness of contacting siblings and/or donors.

After a sandwich lunch and more informal conversation, the second PhD session turned to ‘Ethical issues in genetics policy and practice’. Matt Baum, jointly studying at Ethox and the Oxford Centre for Neuroethics, began with a short reading that posited the US Genetic Information and Non-Discrimination Act as a ‘half-step toward risk sharing’. A spirited discussion of the differences between UK and US genetic testing and policy ensued, with more theoretical commentary on extending non-discrimination policies to all forms of bioprediction. Caroline Huang, also from Ethox, then discussed part of her doctoral work on ‘Ethical considerations surrounding cancer genetics referrals’. The conversation primarily focussed on how the patient pathway to cancer genetics services might be influenced by various ethical considerations such as resource allocation, insurance, clinician education, and geographic variation, along with different connotations of what it means to be referred to or from a service.

In the last full session, Professor Parker briefly spoke about the Deciphering Developmental Disorders project and the ethical issues that arise when considering the clinical implications of research, particularly in the context of rapid technological developments. Following a short coffee break, Oxford PhD student Andelka Phillips, of the Centre for Law, Health and Emerging Technologies, laid out some of the considerations for ethical and legal issues around direct-to-consumer (DTC) genetic testing. A number of interesting views were taken on questions such as whether DTC genetic testing should approximate a consumer market or require health care-specific protections.

The day wrapped up with the PFGS co-chairs, Stevienna and Rachel Douglas-Jones, giving a brief history of the PFGS and opportunities for future involvement. As they noted, this PFGS regional meeting – and all other PFGS events – was made possible thanks to the Genomics Forum’s support and can only happen with organisational volunteering by other PhD students. Email us with your name, Uni, Dept and field of research at pfgscomm [at] to join the PFGS. We’ll let you know about upcoming events and opportunities to host regional meetings at your own institution.


Caroline Huang



One Comment leave one →
  1. 29 June 2012 08:00

    Congratulations to Caroline on a great day.

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