Printer-friendly version Email story link

Groups push a genetic bank

DNA info would aid researchers, but some fear discrimination

By peter korn

The Portland Tribune, Apr 11, 2008, Updated Oct 30, 2009 (3 Reader comments)

JIM CLARK / TRIBUNE PHOTO

OHSU’s Kara Drolet says that the amount of time participants would be followed means that their tissue samples would have to have some identifying information, which could open the door to privacy breaches.

ADVERTISEMENTS

Susan Hayflick, chairwoman of the genetics department at Oregon Health & Science University medical school, wants numbers.

Hayflick’s research involves trying to determine the genetic causes of rare childhood brain diseases. To find these rare genetic mutations, she needs large numbers of people willing to give up DNA samples and participate in clinical studies. But increasing regulations governing medical research have made work like hers difficult, Hayflick said.

“Researchers are losing the ability to do the research they want to do, and study participants are struggling with the amount of documents. It’s gotten crazy,” Hayflick said.

What would make Hayflick’s work easier, and probably speed up the rate of research breakthroughs that could lead to new treatments, she said, is a large biobank that contained DNA samples and medical histories of hundreds of thousands of people.

A national biobank with a half-million DNA samples is exactly what the National Institutes of Health has proposed. But the idea is not without controversy.

And in two weeks, a team of Johns Hopkins University researchers will be coming to Portland to hear whether folks here think it’s a good idea.

The Johns Hopkins team, chosen by the NIH to gauge public reaction to the idea, is hoping that about 200 people representing a cross section of Portland residents and health care workers will attend the second in a series of five scheduled town hall meetings across the nation to discuss the proposed biobank. The first was held in Kansas City, Mo., in early March.

Hayflick loves the national biobank idea. Researchers, not just those studying rare diseases but those studying common ailments, too, could apply to the biobank for access.

That would provide them with many more samples than they currently can access by recruiting participants for their individual studies or relying on the small banks of genetic material kept at hospitals and research centers — including some in Oregon. And the studies would be based on larger numbers — precisely what researchers need, Hayflick said.

“There’s really no other way to do it,” Hayflick said. “Obesity, hypertension, diabetes — the stuff that’s killing people — it would allow us to identify the genetic bases of these problems.”

Not so fast, said Andrea Meyer, legal director of the American Civil Liberties Union of Oregon. Meyer said the possibility of a national DNA biobank poses a number of problems, starting with the potential for discrimination, and including people having their DNA used for research they may not support.

“Once we start storing this information and sharing it and using it, that creates new possibilities for the invasion of our privacy and the potential for stigmatism and discrimination,” Meyer said.

The proposed biobank would hold DNA samples from a cross section of volunteers, said Rick Borchelt, a spokesman for the genetics and public policy center of the Berman Institute of Bioethics at Johns Hopkins.

The bank would house information about volunteers’ health and lifestyles, which would allow researchers to study the connections between genes and health, or even the way they lead their lives.

Everyone whose DNA ends up in the bank would be followed by researchers for at least 10 years. Some participants might wear a sensor to log their exposures to radiation or other environmental contaminants, Borchelt said. Some might be asked to keep a diet and exercise log. Researchers might periodically visit participants’ homes to gather more information.

The result would be a warehouse of information similar to those in England, Japan and Iceland, Borchelt said. The Iceland biobank, which holds DNA and health information from a large number of that country’s residents, already has been cited for breakthroughs connecting genes and diabetes, and for finding genetic factors that appear to influence mental illness.

Some worry about privacy

Large national biobanks are rare, Borchelt said, partly because they are so expensive. The NIH hasn’t yet put a price tag on its proposed biobank, but experts say the project could cost hundreds of millions of dollars.

That kind of money buys numbers, but the project has its detractors, or at least those with concerns.

Deven McGraw, director of the Health Privacy Project at the nonprofit Washington, D.C.-based Center for Democracy and Technology, worries that the size of the NIH’s proposed biobank could increase the potential for participants’ medical histories and genetic information getting into the wrong hands.

Genetic information differs from medical histories in that it often tells less about people’s health than their health to come, or the possible health of their family members.

For instance, a positive test for BRCA 1 or 2, a pair of genes linked to breast cancer, can tell researchers if a patient is more likely to develop breast cancer in her lifetime. It also would indicate that her siblings or children are more likely to get breast cancer.

When that type of information becomes more widely available — to health insurance companies or potential employers — it can cause all sorts of problems.

Health insurers have withdrawn coverage and employers have refused jobs to healthy people whose genes predict a likelihood of future disease.

Oregon law prohibits discrimination by health insurers or employers based on genetics, but many states do not have such laws, and there is no national genetics anti-discrimination law.

Kara Drolet, manager of research integrity at OHSU and co-chairwoman of the state advisory committee on genetics and privacy, said privacy breaches could occur in a number of ways. And because participants would be followed for years, Drolet said, the biobank would not be able to keep tissue samples free of identifying personal information.

“The number of scientists who would want to gain access to this bank would be a lot. There’d be a lot of sharing, and that leaves open the potential for error in confidentiality protection,” Drolet said.

McGraw points to an incident in February when an NIH researcher had his laptop containing names and medical histories of 2,500 participants in a clinical study stolen from the trunk of his car.

“Even if you have the best security protocols and technology in place you still can’t completely engineer human error or technological glitches out of any system,” McGraw said.

Putting the medical histories and genetic information of a half-million Americans in one biobank means that a hacker, or possibly a government official, could get at all that information, experts say.