Experts debate personal genetic data

Wednesday 13 May 2009

"Personal genome testing at its current state is a waste of time and money", argues one of tonight's (Thursday 14 May 2009) speakers at a public, question-time style event to debate the gathering, trading and communicating of personal genetic data. 

The event features a distinguished panel of scientists, clinical geneticists and social scientists and takes place at 17.30 - 19.00, Vivien Stewart Room, Murray Edwards College, Cambridge. It is organised by the ESRC Genomics Policy and Research Forum, based at the University of Edinburgh.

In 2009, everybody can get his or her individual genome scanned - for disease, for ancestry, for recreation. From commercial companies, genome scans for more than a million variations are now available for less than $1000. But what do you get for this money?

Prof Martin Richards, who just had his genome sequenced by two different firms, comments: "The companies' claim that knowing your genetic information puts you in control of your health is nonsense."

"Not only do the results differ significantly, they also reveal little meaningful information with regard to most tested conditions. And even if the information could be more precise and predictive than it currently is, social science research indicates that knowing this information might not result in many people changing their lifestyle or behaviour."

Given Britain's involvement in an international research consortium formed to create the most detailed and medically useful picture of human genetic variation to date, tonight's other discussion points include the scientific value of the information and the regulatory implications of providing public access to personal genome data through academic research projects, as well as through commercial organisations.

Our expert panel is:

  • Dr Frances Flinter (Chair), Consultant in Clinical Genetics, Guy's Hospital, London and Chair of the Human Genetics Commission working group to develop a common framework of principles for direct genetic tests;
  • Dr Richard Durbin, Co-Chair of the 1000 Genomes Project, Wellcome Trust Sanger Institute, Hinxton;
  • Dr Barbara Prainsack, Senior Lecturer Medicine, Science and Society, Kings College, London;
  • Prof Martin Richards, Emeritus Prof of Family Research, University of Cambridge.

Prof Steve Yearley, Director of the ESRC Genomics Forum commented:

" The issue of growing public access to personal genome data is currently high on the agenda of the ESRC Genomics Policy and Research Forum. With this public and panel debate, we aim to involve the public with current discussions over the scientific and medical value of sequencing individuals' samples. As more and more individuals are getting their personal genomes sequenced, it is time to foster consideration of the risks and benefits of knowing your personal genetic make-up and to reflect on suitable regulatory frameworks"

Our panel are available for interview.

A summary of this event, by the ESRC Genomics Forum Science Writer, will be available w/c 18 May 2009 at the Genomics Forum website, or by emailing emma.capewell@ed.ac.uk

For further information contact

  • Emma-Elizabeth Capewell
    Email: emma.capewell@ed.ac.uk
    Telephone: 0131 651 4746
  • Dave Stevens
    Telephone: 0845 257 5388

ESRC Press Office:

Notes for editors

  1. Established in August 2004, the ESRC Genomics Policy and Research Forum is a novel initiative in the field of social science research, funded by the Economic and Social Research Council.
  2. 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;
    • develop links between social scientists and scientists working across the entire range of genomic science and technology;
    • connect research in this area to policy makers, business, the media and civil society in the UK and abroad.
  3. 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.