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)
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.