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Why A Biobank May Soon Ask You For Your DNA And Medical Record06:07Download

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Jeff Osman restocks shelves with test tubes in the Biobank Phlebotomy Office at Massachusetts General Hospital. (Jesse Costa/WBUR)MoreCloseclosemore
Jeff Osman restocks shelves with test tubes in the Biobank Phlebotomy Office at Massachusetts General Hospital. (Jesse Costa/WBUR)

This summer, I got an email with the subject line, “Help researchers at Mass. General or the Brigham make discoveries.”

Think the Boston hospitals — Massachusetts General Hospital and Brigham and Women's Hospital — were hitting me up for a check? Wrong.

Not long afterward, as I was passing through a busy lobby of Mass. General, an eye-grabbing kiosk invited me to “Join us to help shape the future of healthcare.”

Once again, it sure sounded like a charity appeal. But the recruiters didn't want my money.

They wanted my DNA and my medical records, to help them build a massive database for research called a biobank.

The Partners Biobank kiosk in the lobby of the Wang Building at Massachusetts General Hospital. (Jesse Costa/WBUR)
The Partners Biobank kiosk in the lobby of the Wang Building at Massachusetts General Hospital. (Jesse Costa/WBUR)

And chances are good that you'll be invited to join a biobank too, if you haven't been already.

"Over time, the biobank has really become a major institutional initiative that we’ve realized is of increasing value, not only for researchers, but for advancing the health of our community," says Dr. Jordan Smoller, co-director of the Partners HealthCare Biobank that invited me to join. "So we are very eager to get the word out, to let people know that this is something everyone is invited to participate in."

Well, everyone who’s a Partners HealthCare patient, that is. But that's more than 1.5 million people -- Partners is the biggest health care chain in Massachusetts, and includes Mass. General, the Brigham and a dozen other hospitals. More than 70,000 Partners patients have signed up for the biobank already.

And just about everyone — as in Americans across the country, regardless of where they get care — will be invited to participate in a huge National Institutes of Health biobank project called All Of Us that's rolling out its beta version here in Boston and elsewhere this fall.

"We need at least a million people to share their data," says All Of Us director Eric Dishman. "Our mission as a program is to accelerate health research and medical breakthroughs that enable individualized prevention, treatment and care for all of us."

It sounds like a contradiction, right? They need a million people to help them come up with individualized treatment just for you?

But here's an example from Dr. Zak Kohane of Harvard Medical School: His research team wanted to explore why some patients with bipolar disorder respond well to treatment with lithium, but others don't.

Normally, he says, it would have taken years, perhaps decades, to find the relevant patients for the study. But with the Partners Biobank, the researchers could rapidly find dozens of patients and ask them if they wanted to participate.

"And so now," he says, "what we're doing is using their cellular material to actually study what's different about their genes and how they're regulated, in these patients compared to one another. This allows us to cut off years for research."

And that means that eventually, if you have bipolar disorder, your psychiatrist may be able to use your genes to inform the decision on whether to prescribe you lithium.

A Force Multiplier For Research

Multiply that study by thousands and you can see why Partners HealthCare needs a biobank, as a kind of force multiplier for the $1. 5 billion worth of medical research it does every year.

And why the NIH is launching its All Of Us project, and the Veterans Administration is gathering data from a million vets, and the United Kingdom has collected biodata on a half-million Brits.

"We're sort of at a magic moment when it's kind of this amazing confluence of three things," Dishman says. "Science, technology and consumers, and changes on all three of those fronts."

That confluence includes ever-greater computing power, the spread of electronic medical records and the plummeting price of DNA analysis. Put all that together and biobanks can begin to mesh terabytes of data on our genes, our health and our lives to help pinpoint what makes us sick and what could keep us well.

The consumer element Dishman mentioned: Digital denizens of the 21st century even gather their own health data, on smartphones and watches, and many are willing to share it.

A Needle May Be Involved

Jeff Osman walks into the biobank phlebotomy office. (Jesse Costa/WBUR)
Jeff Osman walks into the biobank phlebotomy office. (Jesse Costa/WBUR)

But joining a biobank involves more than just sending in your Fitbit stats, as I learned when I responded to that email inviting me to the Partners Biobank, and stopped in to a tiny office in the Yawkey building at Mass. General Hospital.

There, I was kindly hosted by research coordinator Jeff Osman, who talked me through a consent form that appeared fairly typical for research subjects. It warned me that I can't expect to benefit personally from the research, and I wouldn't necessarily even know the results.

But Osman did include this little DNA twist: "However, if we did have what's called a 'clinically actionable' finding, meaning that we found a genetic marker for a disease that there's a treatment available for, we would let you know about that."

So that would be something like the BRCA mutations linked to breast cancer — which made me think, "Hey, great, I can get some expensive personal DNA testing for free!"

Not really, Osman explained. The biobank doesn't systematically screen for harmful mutations — it would just let me know if researchers happened to come across something.

He also addressed what's probably the biggest concern for most people: "The primary risk of the research: Any time your medical record is involved there's a risk of a loss of privacy," Osman said. "We're a minimal risk study, so we say the risk of a privacy loss is no greater than a regular office visit with your physician."

And, one other downside: At this point, a needle was involved.

"Looks like you've got a good vein right there," Osman told me. "All right, it's just going to be a sharp poke." (Actually, it didn't hurt a bit. Thank you, Jeff.)

The blood draw took a few minutes, plus a few more to answer an online questionnaire at home — and that was it. Now I guess I just wait to see whether my DNA turns up any "actionable results" — and pat myself on the back for doing my tiny part to "shape the future of health care."

The national All Of Us project will ask for more.

"The essence of this program is you coming on a long journey with us," director Dishman says. "So the first thing we want from you is a commitment to be with us for a long time, because we need to understand health changes over your lifetime."

So you don't just fill out a survey and that's it, he says. "This is like the famous Framingham Heart Study in Massachusetts, but across the whole country and across all diseases and all health issues that may occur, and as many diverse people as possible."

Dishman says that diversity is his biggest worry — getting people from all walks of life, all different races and ethnic groups and locations, to sign up, so the benefits of the research will be maximally broad as well.

"My fear at night, that keeps me the most awake — people always say, 'Oh, it's the security isn't it?' No, we are taking security incredibly seriously. [But] it's engaging diverse communities," he says.

The Boston arm of the All Of Us project is enrolling a few patients this fall through Partners and Boston Medical Center, and aims to ramp up in the spring.

Meanwhile, about 2,000 people a month are signing up for the Partners Biobank, says its Mass. General co-director, Dr. Sue Slaugenhaupt.

She argues that it's time for all patients to think about participating in medical research, because now they all have something to offer — and they, or their children, or their children's children could benefit.

"I'd like to think it's their right, but also I think their duty to help us," she says, "because without patients participating, we can't do anything.

"I just can't imagine saying no," she says.

Can you imagine it? You might want to consider, because you may face the decision soon.

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This segment aired on September 27, 2017.

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Carey Goldberg Twitter Editor, CommonHealth
Carey Goldberg is the editor of WBUR's CommonHealth blog.

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