Stricter controls for direct-to-consumer genetic testing?

ESRC genomics forum press release

Wednesday 17 June 2009

Should commercial providers of direct-to-consumer genetic tests have to back up their advertising claims and should they be subject to international market controls? These will be among the questions discussed at a major conference on genetics and healthcare, today (Wednesday 17 June 2009).

Personal genetic testing is a rapidly growing market. There is increasing concern among healthcare professionals that the information provided by commercial genetic tests is often hard to interpret, yet may profoundly influence an individual's lifestyle choices, and ultimately long term health. The conference will explore whether stricter international market controls would safeguard the interests of consumers and ensure they can make rational and informed choices about taking genetic tests.

Dr Steve Sturdy, Deputy Director of the ESRC Genomics Policy and Research Forum and one of the conference's organisers commented,

"Personal genetic testing looks at first sight like an invaluable way of finding out about our health and identity. But the results are often highly ambiguous, and may lead to unfounded anxieties that the health services then have to deal with. It is a moot point whether these tests should be freely available to consumers. Today's conference will provide a valuable opportunity for health care professionals, policy makers, patients and others to come together to discuss these and other issues.

Dr Sturdy continued, "The implications of growing public access to personal genetic data are currently high on Gengage's agenda, but it is just one example of how genetic science is influencing how we plan and deliver our national healthcare services. Today's event will also discuss how advances in this rapidly evolving area of science will affect policy making and society, and how education and public engagement activities can increase understanding of these issues."

A Genetic Health Service? is the first annual Gengage conference, taking place in Glasgow, on Wednesday 17 June 2009. Gengage is managed by the ESRC Genomics Policy and Research Forum, based at the University of Edinburgh.

The conference brings together healthcare professionals, policy makers, patient groups, researchers, science communicators and public engagement practitioners.

Conference speakers include:

  • Kenneth Boyd, Prof of Medical Ethics at University of Edinburgh and Gengage Chair
  • Prof Roland Wolff, Director of University of Dundee's Biomedical Research Centre; Honorary Director, Cancer Research UK Molecular Pharmacology Unit; and Scientific Director, CXR Biosciences Ltd
  • Dr Mike Winter, Medical Director, National Services Division
  • Dr Harald Schmidt, Assistant Director, Nuffield Council on Human Bioethics
  • Alastair Kent, Director, Genetic Interest Group
  • Emma Burton, Human Genetics Commission
  • Dr David Boak, Biotechnology and Biological Sciences Research Council Strategy Panel Member

Conference discussion points include:

  • The challenges of an increasing role for genetics in the diagnosis and management of health conditions
  • Developments in genetic medicine in the context of Scottish Government policy
  • Genetic conditions/implications of confidentiality when working with families
  • How to safeguard consumers with regard to genetic testing
  • How to involve 'hard to reach' groups in dialogue
  • Does knowledge of a genetic condition influence health and lifestyle choices?

For further information contact

  • For interviews with Dr Sturdy, or other speakers in advance of the conference, contact
    Emma-Elizabeth Capewell
    Email: emma.capewell@ed.ac.uk
    Telephone: 0131 651 4746
  • Media places are limited, so if you wish to attend the event, please contact Claire Alexander
    Email:claire.alexander@ed.ac.uk
    Telephone: 0131 651 4744

ESRC Press Office:

Notes for editors

  1. Full conference details at the Gengage website
  2. Speaker biographies are available on request.
  3. A Genetic Health Service? is the first annual Gengage conference. It takes place at Graham Hills Building, University of Strathclyde, 50 Richmond Street, Glasgow, G1 1XP, 0930-1700.
  4. The Human Genetics Commission will be consulting on a draft of the principles during the summer, and conference attendees will be able to use the direct to consumer genetic testing workshop as an opportunity to contribute to the consultation.
  5. Gengage was established in June 2008 to bring together individuals and organisations in Scotland working on healthcare genetics in order to promote dialogue and debate on the issues and implications of this field. Gengage is managed by the ESRC Genomics Policy and Research Forum, based at the University of Edinburgh.
  6. Established in August 2004, the Economic and Social Research Council's (ESRC) Genomics Policy and Research Forum is a novel initiative in the field of social science research. As part of the ESRC Genomics Network (EGN), the Forum acts to integrate the diverse strands of social science research within and beyond the EGN; to develop links between social scientists and scientists working across the entire range of genomic science and technology; and to connect research in this area to policy makers, business, the media and civil society in the UK and abroad.
  7. The Economic and Social Research Council (ESRC) is the UK's largest organisation for funding research on economic and social issues. It supports independent, high quality research which has an impact on business, the public sector and the third sector. The ESRC's planned total expenditure in 2009/10 is £204 million. At any one time the ESRC supports over 4,000 researchers and postgraduate students in academic institutions and independent research institutes.