Newly published study on public attitudes toward selling access to human specimens
The almost 5 million people who paid to get their DNA analyzed by the company 23andMe recently found out that their genetic data and related health information might have been sold to a major drug company. That's because 23andMe made a $300 million deal with pharmaceutical giant Glaxo SmithKline, to let it tap that genetic goldmine to help it develop new medicines. If 23andMe customers consented to allow their DNA samples to be used for research when they sent them in, their data can be sold in this way. Millions more people have samples sitting in very different kinds of biobanks: at universities and major teaching hospitals. When patients have surgery, biopsies, or blood draws at hospitals, those specimens may be kept for future research.
A new University of Michigan survey documents public attitudes toward potential commercial use of these samples. The survey reveals what members of the public think about such deals, and what they would want to know if their specimen were part of one, even if it didn't have their name attached. The results are published in a new paper in the August issue of the journal Health Affairs, by a team of U-M bioethics researchers from the Medical School and School of Public Health. Only one in four of the 886 people surveyed nationally said they'd be comfortable with companies getting access to their leftover specimens from a university or hospital biobank.
Kayte Spector-Bagdady, Raymond De Vries, Michele Gornick, Andrew Shuman, Sharon KArdia, and Jodyn Platt are authors on the study.