Biobanks: Harvesting spit in the name of medicine

A biobank is a repository of DNA samples, and a new one in the Bay Area is the largest in the United States – backed by $25 million in grants from the National Institutes of Health.

Scientists from Kaiser Permanente and UCSF are using the data to help solve big problems – like to find more effective, personalized treatments for cancer, and possibly even cures.

But there are lingering ethical questions. Reporter Sindya Bhanoo reports.

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SINDYA BHANOO: Stephen Vandeneeden is staring at cups containing spit.

STEPHEN VANDENEEDEN: All the little containers we have in this machine are saliva samples that our participants have provided to us.

Vandeneeden is an epidemiologist at Kaiser Permanente in Oakland, California. The saliva is showing him something about prostate cancer.

VANDENEEDEN: And the machine is going in automatically and picking up the saliva and then putting them into these smaller tubes over here.

Dr. Vandeneeden and his team are trying to find patterns that show whether certain genes cause specific diseases.

VANDENEEDEN: This is a study of prostate cancer and it’s focused specifically on African-American men. Particularly in the genetics area, a lot of that research has really been focused among white men. One of the things we know about prostate cancer is that African-Americans get it at twice the rate that white men do. And also, once they get it, they die twice as often. We’re really trying to go after that information and figure out why that is. And one of the factors we’re looking at is genetic factors.

It’s important work, and this is a massive study, involving several thousand Kaiser patients.

VANDENEEDEN: There’s two types of data we’re merging it with. One is information we collect from the men themselves. So we interview them and collect risk factor information. Some of things you might suspect – how much they smoke, how much physical activity they get. We also will be merging it, with their consent, with the Kaiser data. So when they come in with their electronic data – again, with their permission – we’ll be putting that together to see if factors like diabetes affect their risk of prostate cancer.

Altogether, it’s a lot of information, not the least of which is the patients’ genetic codes. Since DNA is personal and sensitive, Kaiser is taking precautions to de-identify patient information. Although there is a computer file that connects every person to their DNA, the information is kept secured and encrypted.

Still, at least one former Kaiser patient who was invited to participate chose not to participate because of privacy concerns.

SALLY TOBIN: They were asking what I thought were very sensitive questions about sexual orientation and about income level.

Sally Tobin is a long-time Bay Area resident who considered signing up for the study, but then backed out.

TOBIN: It just made me wary. And so I contacted the people who were running the study and I wrote a letter based on my concerns, and I didn’t ever receive a satisfactory response.

Tobin is not your typical patient. She is a senior lecturer at Stanford’s Center for Bioethics where she studies the influence of genetics on medical care.

TOBIN: The other thing that's important about DNA is that we share it with all of our relatives. I think it's appropriate for everybody to realize that if they posted their DNA openly on the Internet they are also posting their relatives' DNA as well.

Now, Dr. Tobin is no luddite. She believes in the importance of genetic research. DNA is currently being analyzed for clues to the causes of cancer, diabetes and Alzheimer's. And while that can expose predispositions to diseases, Tobin says the federal government has only recently become more aware of the potential benefits and dangers of sharing genetic information.

TOBIN: There is federal legislation against discrimination that prohibits insurance companies from discriminating, or from charging different rates, on the basis of genes that somebody inherits. The chance of someone being discriminated against, if their genetic information becomes public, is relatively small, especially with the changes in health care these days.

But for privacy advocates, insurance abuse is only one potential pitfall when you share your spit.

LEE TIEN: Privacy is an issue in every area of life.

Lee Tien is a senior staff attorney with the Electronic Frontier Foundation.

TIEN: People want to make sure that they have control over who knows facts about them, whether it’s your social security number, your bank records, how much money you make. Under global law, we generally recognize that medical or health information is probably among the most private kinds of information you can have.

When it comes to genetics, Lee says patients are entrusting personal data to strangers, and that could come with consequences.

TIEN: We’ve seen that trust breached in the past. A very famous case was settled earlier this year involving the use by researchers at Arizona State University of blood samples and DNA from a small tribe of Native Americans, the Havasupai.

In April, the University’s Board of Regents settled the case by paying $700,000 to 41 members of the tribe.

TIEN: The tribe believed that they were giving up their blood and DNA samples for the purposes of diabetes research, because diabetes was really affecting many of the members of the tribe.

But tribe members later found out their samples were being used to study mental illness and to formulate theories about their geographic origins.

TIEN: From the larger social standpoint it’s a cautionary tale about research ethics.

But epidemiologist Stephen Vandeneeden says that in his Bay Area research, he and his colleagues are taking sufficient precautions with the saliva they have on hand.

VANDENEEDEN: We keep every bit of their information – from their biospecimens that they've provided to the data they've provided, and even their medical record data, which they've agreed to allow us to look at. We keep all that separate from their identifying information. Even if they were able to break into the lab and steal a sample they wouldn’t know who it was.

And so, as with many privacy issues, it’s a matter of faith. And faith is something Dr. Vandeneeden believes is necessary to cure diseases like prostate cancer.

VANDENEEDEN: Medical science has gotten forward through research. We wouldn’t even know that smoking was a risk factor for lung cancer without research. It took many years before that research was convincing to the point where everybody believed it. It takes that kind of information, where we collect it now and look for disease later. And if we don't have participants in that kind of research, we'll never know.

Dr. Vandeneenen thinks he’s about two years away from finding any definitive information in DNA that could contribute to cancer research. So in the name of better medicine he’ll continue studying spit. And privacy advocates will continue to watch him.

In San Francisco, I’m Sindya Bhanoo, for Crosscurrents.

Sindya Bhanoo has a Kaiser Media Fellowship in Health and is examining how privacy is affected by new developments in health technology.