How would you feel if you found out your genetic data and related health information was sold without your explicit knowledge? Many millions of people who paid to get their DNA analyzed by 23andMe recently had to face that reality when 23andMe let GlaxoSmithKline tap into its genetic goldmine to help develop new medicines.
The same quandary applies to millions more people who have samples from surgery, biopsies, or blood draws sitting in medical biobanks around the country. As biobanks struggle to find sustainable funding, commercialization of specimens is a potential solution.
In light of situations like these, University of Michigan bioethics researchers recently surveyed public attitudes toward potential commercial use of these samples. The survey assessed what members of the public thought about such commercialization 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 were published in the August issue of Health Affairs.
Only one in four of the 886 people surveyed nationally said they would be comfortable with companies getting access to their leftover specimens from a university or hospital biobank. Two-thirds of the survey respondents said that if such a deal happened, they'd want to know.
If the specimens in academic biobanks don't include patients' identifying information, researchers don't need informed consent from the patient in order to keep them for research. However, as Andrew Shuman, M.D., co-chief of the Clinical Ethics Service of the Center for Bioethics & Social Sciences in Medicine, points out, "there are compelling reasons to ask for patient consent before we collect specimens for research—whether or not their identifiable health information is included."
Nonprofit institutions, like academic medical centers, usually use these samples for research. But often they need to look elsewhere for funding to support the upkeep of the biobank—and may sell access to private companies. "That's a big part of the business model of the direct-to-consumer genetic testing companies" points out U-M faculty member and co-author Michele Gornick, Ph.D., but it was not the driving force behind the creation of academic biobanks.
As more academic institutions seek to commercialize their biobanks, the U-M team asked survey respondents what universities and hospitals should do with the money they might get from such deals.
Sixty-two percent said they should plow those funds back into more research. The U-M researchers argue in the new article that these findings demonstrate that when researchers are asking for informed consent to biobank donation, they should also disclose what the money will be used for in the future.
"We found that if you disclose commercial interests, people are less likely to participate," says Jody Platt, Ph.D., the study's senior author and assistant professor. "But if you also tell them that the money will be reinvested in research, this will reengage trust and encourage participation."