What challenges do the use of genetic information in employment and insurance pose for policy makers? How can we recognise genetic discrimination when it happens? What risks are there of genetic discrimination in the provision of healthcare and other public and commercial services?
These and other issues were discussed at a one-day seminar in London this week organised jointly by the Arts and Humanities Research Council (AHRC) and the Human Genetics Commission (HGC).
Policymakers and academics from a range of disciplines offered their perspectives on the issue of genetic discrimination in order to reach a clear understanding of what genetic discrimination means today.
Professor Jonathan Montgomery, HGC Chair, said, “In the ten years since the first draft of the human genome was completed rapid developments in gene sequencing technology make it important to consider carefully all potential uses of genetic information. The core aim of this seminar is to develop a clear understanding of how this information may be used unfairly to disadvantage certain groups of citizens. We need to understand what genetic discrimination is in order to guard against it. Only then can we define the best mechanisms to monitor it and protect all citizens from unfair treatment. ”
Jonathan Breckon, AHRC Director of Policy and Public Affairs, said "UK humanities researchers have a key role to play in helping to define genetic discrimination policy advice for Government. Disciplines such as ethics, philosophy, law, religion, language and gender studies are important in helping us develop a better understanding of recognising and collecting evidence of genetic discrimination and assessing the adequacy of existing safeguards."
Among the speakers were Professor Paul Miller, US discrimination and employment expert and until recently adviser to President Obama, Professor John Dupré, Director of the ESRC Centre for Genomics in Society (Egenis) at Exeter University and Catherine Casserley, discrimination, employment and human rights lawyer and adviser to the Equality and Human Rights Commission on the Equality Bill.
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For further information please contact AHRC Communications Manager: Jake Gilmore, tel: 0797 099 4586 e: j.gilmore@ahrc.ac.uk
Notes to the Editors
Understanding Genetic Discrimination was held at the Wellcome Collection Conference Centre from 9:30 – 17:00 on 28 January 2010
Topics to be covered included
• The historical and philosophical underpinnings of genetic discrimination
• The existing framework of discrimination law
• A view from the US
• Genetic differences in research
• Public perceptions
Arts & Humanities Research Council (AHRC): Each year the AHRC provides approximately £102 million from the Government to support research and postgraduate study in the arts and humanities, from languages and law, archaeology and English literature to design and creative and performing arts. In any one year, the AHRC makes approximately 700 research awards and around 1,350 postgraduate awards. Awards are made after a rigorous peer review process, to ensure that only applications of the highest quality are funded. The quality and range of research supported by this investment of public funds not only provides social and cultural benefits but also contributes to the economic success of the UK. www.ahrc.ac.uk
Human Genetics Commission: Is the UK Government's advisory body on new developments in human genetics and how they impact on individual lives. We give the Government advice on human genetics with a particular focus on the social, ethical and legal issues. One of our key roles is to promote debate and to listen to what the public and our stakeholders have to say. We are committed to openness and transparency.
The Commission is made up of twenty-one members including experts in genetics, ethics, law and consumer affairs. The Chair is Professor Jonathan Montgomery. We also have a Consultative Panel of people who have direct experience of living with genetic conditions and who act as a sounding board for our reports and recommendations.
www.hgc.gov.uk