Direct to Consumer Genetic Testing Workshop
Event date: 21 May 2009
Speakers: Professor Andrew Wilkie (University of Oxford), Dr Jenny Taylor (University of Oxford), Dr Agnar Helgason (deCODEme), Professor Jonathan Wolff (Nuffield Council on Bioethics and University College London), Dr Rob Reid (Which? Magazine), Stuart Hogarth (Centre for Biomedicine and Society at King's College London), Dr Helen Wallace (GeneWatch UK), Jim Kinnier Wilson (Manches LLP)
Venue: Richard Doll Building, Department of Public Health and Primary Care, University of Oxford
Abstract: The Ethox Centre , the Program on the Ethics of New Biosciences and the Oxford Biomedical Research Centre co-organised a one-day workshop in Oxford to explore the ethical and regulatory issues surrounding the recent development and marketing of direct to consumer genetic tests. Companies such as deCODE Genetics, 23andME and DNADirect are already marketing direct to consumer genetic tests but there has so far been little in-depth discussion about the potential benefits and risks of such tests, and how to manage them through regulation. The workshop brought together experts in ethics, science, business and law to discuss the scientific, commercial, consumer, ethical and regulatory aspects and to consider how to ensure this emerging market is properly managed.
Notes: The workshop went very well and was highly productive. All of the speakers provided very valuable and different perspectives on the issues. Dr. Jenny Taylor (Oxford) set the science by considering, among other things, the possible role of DTC genetic testing within the context of healthcare provision and as enabling the translation of scientific progress into patient care. Professor Andrew Wilkie (Oxford) then laid down the sceptical scientific/medical challenge to the companies providing these services — that the information available is not robust enough to be relevant or useful. Dr. Agnar Helgason (DeCODEme) gave an instructive tour through the services provided by DeCODEme, paying particular attention to the steps that this company takes to ensure that consumers are given accessible and meaningful data and that they are provided with comprehensive educational tools.
Professor Jo Wolff (UCL) then outlined the arguments behind the right to access and know about one’s genetic information. He went on to sketch the kinds of consideration that might tell against this right to access — specifically when markets such as those in question here undermine broad social meanings and practices.
Helen Wallace (GeneWatch) then outlined the dangers and risks associated with misunderstanding, misinterpretation and misrepresentation of genetic information in the commercial context. Rob Reid presented, hot off the press, the results of a Which?public survey on attitudes to DTC genetic testing. Finally, Stuart Hogarth (KCL) and Jim Kinnier-Wilson (Manches) gave complementary presentations on the current regulatory situation.
There was a good deal of consensus about the need for standards to be set and enforced with respect to DTC companies and the service they provide. There was particular emphasis given to the need for individual consumers to be properly educated about the nature and limits of the information they would be receiving from the companies.
A large part of the remaining discussion focussed on:
• The extent to which the service being provided by DTC companies should be regarded as a medical service (and so subject to the norms and values of medicine) or as a more straightforwardly consumer service.
• The consequences of these issues for the level of regulation appropriate for DTC genetic testing companies and the specific forms that such regulation might take.
Consumer and Regulatory Aspects
Dr Rob Reid: Powerpoint [PDF file: 177 KB]
Stuart Hogarth: Powerpoint [PDF file: 394 KB] | Click here to listen online | Download from iTunes U
Dr Helen Wallace: Powerpoint [PDF file: 708 KB] | Click here to listen online | Download from iTunes U