The Age of Personalised Medicine: Genes, Privacy and Discrimination?

Thursday 21st July 2011, 2:00pm–4:30pm Followed by a drinks reception

Charles Darwin Conference Centre, 12 Roger Street, London WC1N 2JU

PDF invite can be downloaded here

This is the fourth and final symposium of BioCentre’s 2010–11 series, entitled “Revolution, Regulation and Responsibilities: Technology and democracy in the 21st Century” and is co–hosted with The Biochemical Society.

The sequencing of the human genome ushered in a revolution in terms of our understanding of health and disease. The application of genetic and genomic information in helping to form diagnosis, prognosis and treatment promises to offer more specific and efficient healthcare provision for the patient, giving rise to what many refer to as ‘personalized medicine’.

With this ‘new medicine’ has come a consumerist approach to healthcare and the new technologies available have been seized upon by businesses offering genetic profiling and online medicine services. Already patients have easy access to genetic tests run by various labs and over the counter (”direct to consumer” or DTC kits) without being properly informed as to the risks involved and the interpretation of results. Likewise, with increasing amounts of personal genetic information being generated for both research and healthcare, concerns have also been raised concerning personal privacy, data security and the potential for discrimination.

This symposium, co–hosted with The Biochemical Society, will therefore seek to appraise current developments and consider the current legal and regulatory position for their use before taking time to reflect and assess the future impact on society.

Speakers include:

Professor Brenda Almond, Emeritus Professor of Moral and Social Philosophy at the University of Hull and former member of the UK’s Human Genetics Commission.
Dr. Adele Langlois, School of Social Sciences, University of Lincoln speaking on “The UNESCO Bioethics Programme: a forum for progress in the regulation of genetics?”

Dr. Ruth Stirton, Sheffield Law School and Sheffield Institute of Biotechnological Law and Ethics (SIBLE).

Dr. Helen Wallace, Director, GeneWatch

Alison Hall, PHG Foundation

Aaron Parkhurst, Centre for Applied Global Citizenship, University College London

The event is free to attend but RSVPs are required.

Please include your name and the organisation that you represent in your response.

To RSVP: e: info@bioethics.ac.uk | t: 0207 227 4706 | w: www.bioethics.ac.uk

Professor Brenda Almond

Brenda Almond is Emeritus Professor of Moral and Social Philosophy at the University of Hull. She has served on both the Human Genetics Commission and the HFEA (Human Fertilisation and Embryology Authority). She is the author of a many publications in ethics and bioethics, including an article on neonatal profiling in Nature Genetics, as well as a number of books, including Exploring Ethics: a traveller’s tale, Ethical Issues in the New Genetics (ed. with Michael Parker) and The Fragmenting Family. She also edited AIDS – a moral issue: the ethical, social and legal aspects.

Alison Hall

Alison HallIn her role as Project Manager in Law and Policy Alison Hall has responsibility for the legal, ethical and social components of the Foundation’s work. Her work incorporates issues arising from clinical, individual and research use of genetic tests and other biomarkers, the governance and regulation of human tissue and data as well as wider debates about the implications of genomics and personalised medicine on health systems, services and individual behaviour. Alison is also interested in the burgeoning direct–to–consumer market for genetic tests and the regulatory issues that arise, as well as how issues such as informed consent and feedback of research findings need to be adapted to take account of new technologies and data sharing practices. Alison focuses upon how these issues are translated into legislation and professional guidelines, and her role includes responding to relevant consultations on draft legislation or emerging policy on behalf of the PHG Foundation. These interests are underpinned by professional experience both as a qualified nurse and solicitor, as well as a masters degree in health care ethics.

Dr. Adele Langlois

Originally from Guernsey in the Channel Islands, Adèle studied biological anthropology (BA Hons) at Cambridge University, followed by politics and international relations (MA) at Brock University in Canada. In 2008 she completed her PhD at The Open University, for which she examined the negotiation and implementation of three UNESCO declarations on genetics and bioethics, from an international relations perspective. After a year at Cambridge as a Research Associate, Adèle joined the School of Social Sciences at University of Lincoln in September 2009. Between her degrees, Adèle worked for various different organisations: as a student worker at a church in Cambridge, at the Island Archives Service in Guernsey and in the International Development department of Christian Aid in London. She has conducted fieldwork in India, Kenya and South Africa and in 2008 was a Research Fellow at the Parliamentary Office of Science and Technology (POST), where she produced a policy briefing for MPs and Peers on research ethics in developing countries. She has conducted fieldwork in India, Kenya and South Africa and in 2008 was a Research Fellow at the Parliamentary Office of Science and Technology (POST), where she produced a policy briefing for MPs and Peers on research ethics in developing countries. Her research interests include the regulation of human genetic and biomedical research, polio eradication and normative theories of global governance.

Aaron Parkhurst

Aaron Parkhurst completed his undergraduate degree at Brandeis University with a double major in Molecular Biology and Anthropology. He worked in Behavioural Neuro–Genetics for 2 years, studying molecular mechanisms for circadian rhythm and sexual behaviour. He later spent a year studying cancer genetics at Fred Hutchinson Cancer Research Centre in Seattle, Washington before moving to London. He completed his MSc in Medical Anthropology from University College London (UCL) in 2006, studying perceptions of Avian Flu in London and In the United States. In 2007 he moved to Dubai and began a project with UCL and the Health Authority of Abu Dhabi (HAAD) to study indigenous understandings of health and well–being in the Arabian Gulf. In addition to his ethnographic research, he worked in government hospitals in the Emirates to study the stigmatization of mental illness to help promote the introduction of psychiatry into primary health care. He also worked in clinics to study local conceptions of Diabetes and other chronic health conditions. He returned to London in October 2010. His PhD thesis focuses on changing perceptions of the ‘self’ in Dubai, Abu Dhabi, and Oman, cross–cultural understandings of biomedicine and genetics, and humanity’s anxieties and struggles with modernity. He has a particular interest in bioethics in the face of globalization and urbanity.

Dr. Ruth Stirton

Ruth Stirton is a Lecturer in Law at the University of Sheffield. Her area of research interest is medical law and ethics, with a focus on genetics and insurance discrimination. She also researches in research ethics and medical law generally. Her PhD (from Manchester), entitled “Gene Rummy: Keeping Control of Your Hand” looked at the individual right to decide to undergo predictive genetic testing, and the ethical and legal implications for life insurance. At Sheffield, Ruth is a member of the Sheffield Institute for Biotechnology Law and Ethics. Ruth has served for many years as a member and chair of NHS Research Ethics Committees, and currently sits on the Sheffield REC. She has published articles on genetic discrimination, genetic exceptionalism and the insurance moratorium. Further details, and a list of publications can be found here.

Dr. Helen Wallace

Dr Helen Wallace is the Director of GeneWatch UK, a not–for–profit organisation which aims to ensure that genetic science and technologies are used in the public interest. Helen has been responsible for GeneWatch’s work on human genetics since 2001 and has argued for the regulation of genetic tests; safeguards to protect privacy and human rights and prevent discrimination; and greater public engagement in research priorities, including an end to the patenting of genes. She has exposed a number of misleading tests sold direct–to–consumer on the UK market. Helen has a degree in physics and a PhD in applied mathematics: her scientific background is in the computer modelling of complex environmental systems. She has published articles in both science and social science journals on issues relating to the science and ethics of screening for genetic susceptibility to complex diseases.