Direct-to-consumer genetic testing is already a reality. Companies such as deCODE Genetics, 23andME and DNADirect have been marketing genetic tests to assess an individual's risk of developing conditions such as diabetes, breast cancer, heart attacks and strokes for over two years now.
However, there has been very little discussion about the potential benefits and risks of such tests. On 21 May, the Programme on the Ethics of New Biosciences, together with the Ethox Centre and the Oxford Biomedical Research Centre, held a workshop in Oxford to explore these issues.
The workshop brought together experts in ethics, science, business and law, to discuss the scientific, commercial, consumer, ethical and regulatory issues surrounding the development of this emerging market. Speakers included Dr. Agnar Helgason, of DeCODEme, and Helen Wallace, of GeneWatch, who outlined the dangers and risks associated with misinterpretation of genetic information in a commercial context.
The workshop was highly productive, with a good deal of consensus on the need for standards to be set and enforced with respect to these companies and the services they provide. A particular emphasis was 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.
Further details, including a summary report and video of the workshop will be made available in the coming weeks.