What patients think of companies selling their DNA

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A new survey reveals public attitudes toward potential commercial use of their DNA, blood, and tissue samples.

Recently, the almost 5 million people who paid to have 23andMe analyze their DNA found out that the company might have sold their genetic data and related health information 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 researchers to use their DNA samples when they sent them in, the company can sell their data 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 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 journal Health Affairs.

Biobank business

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.

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, a head and neck surgeon and co-chief of the Clinical Ethics Service of the Center for Bioethics & Social Sciences in Medicine at the University of Michigan 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 through a process called commercialization.

“That’s a big part of the business model of the direct-to-consumer genetic testing companies” says coauthor and research investigator Michele Gornick, but it wasn’t the driving force behind the creation of academic biobanks.

As more academic institutions seek to commercialize their biobanks, the researchers 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 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, the authors argue.

Disclosure is vital

The findings also suggest that institutions should go above and beyond what the law requires, under the newly revised Federal Policy for the Protection of Human Subjects, or “Common Rule,” that takes effect in January. The new regulations will often require public biobanks to disclose to patients if they will commercialize specimens in the future.

The research has real-world implications, says senior author Jody Platt, an assistant professor in the Medical School and School of Public Health.

“We found that if you disclose commercial interests, people are less likely to participate,” says Platt. “But if you also tell them that the money will be reinvested in research, this will reengage trust and encourage participation.”

The survey included a nationally representative sample of adults who were presented a scenario about biobanking and commercialization, and then answered questions online.

“The new disclosure laws are supposed to be a floor, not a ceiling,” says lead author Kayte Spector-Bagdady,  chief of the Research Ethics Service at CBSSM. “But it may be counter-intuitive for biobanks to disclose more information than legally required. Here we found that they should be doing just that.”

Source: University of Michigan