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'Principled' personalized medicine?
Bartha Maria Knoppers1, Denise Avard1
1Centre of Genomics and Policy, McGill University and Genome Quebec Innovation Centre, 740 Dr. Penfield Ave, Room 5210, Montreal H3A 1A4, Quebec, Canada. bartha.knoppers@mcgill.ca.
Abstract:
The advent of both population genomic studies and direct-to-consumer personal genetic testing raises ethical challenges for researchers and physicians alike. Quality and solidarity can now be added to traditional ethical principles, such as autonomy and privacy. There is no doubt that genetic information is going 'public'. Informatic technologies allow for greater accessibility and integration, but can researchers and physicians handle the challenges? Are ethics committees equipped to handle this shift towards greater openness and towards a conflation of research and traditional medical ethics?