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How a research campus in North Carolina deals with ethical questions on biobanking

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  • JOHN LARSON:

    When you first see The North Carolina Research Campus near Charlotte, you're struck by its colossal, Georgian-style buildings. But to understand what's going on inside, you should know more about what came before. Starting in the early 1900s, a textile mill occupied the same 350 acre property in the town of Kannapolis. Cannon Mills manufactured cotton sheets and towels. At its peak, it employed 20,000 workers. Gilbert Cantrell and his wife both worked there.

  • GILBERT CANTRELL:

    The whistle went off to wake you up. The whistle went off to tell you it's time to go in. You would see thousands of people passing each other, going in and out of the building at shift time.

  • JOHN LARSON:

    By the 1990s, the mill was struggling: cheap imports were undermining profits. When the mill finally went bankrupt and closed in 2003, more than four thousand workers lost their jobs. It was the worst layoff in the state's history.

  • GILBERT CANTRELL:

    It devastated a lot of lives. They were people that that was all they knew. They didn't know how they were going to do anything else.

  • JOHN LARSON:

    Two years later, a billionaire California investor bought the property and tore the mill down. David Murdock, chairman of The Dole Food Company, was fond of the town and also had once owned the mill in the 1980s, but now he had different plans for the property. Murdock is an extreme health and nutrition enthusiast who even now at 93 plans on living to be 125.

  • DAVID MURDOCK:

    I believe that some of those solutions will come right from this scientific center.

  • JOHN LARSON:

    He has invested more than 800 million dollars to build the campus and launch research that he hopes will re-invent modern medicine. To get a sense of the original vision of the founder, all you have to do is come in through the front door of the main building here on the research campus. Inside you'll find Italian marble lining the floors, and if you look up, you see Murdock's fascination with radishes, blueberries, and healthy foods. And the eagle with an 18 foot wingspan – that represents him.

    In the past decade, the campus enlisted 20 partners from universities like Duke and the University of North Carolina to companies like General Mills and Monsanto, hoping like Murdock to better detect and fight diseases including Alzheimer's, prostate cancer, and multiple sclerosis. Murdock declined to be interviewed. Doctor Kristin Newby is one of his lead scientists.

  • JOHN LARSON:

    What's the dream for this?

  • DR KRISTIN NEWBY:

    So it's this idea that we can get better at delivering the right drug to the right person at the right time.

    But before they can do that, scientists must first conduct an ambitious study, called the MURDOCK Study, which may play out over generations. Researchers are gathering blood and urine samples from more than 12,000 local residents and storing those in a huge biobank, a refrigerated repository. In this case, the biobank is nearly the size of a football field. Then the specimen's DNA is analyzed as needed.

  • DR KRISTIN NEWBY:

    Those samples, along with the information that people tell us about themselves, and then things like the air pollution levels, the temperature, the humidity, access to healthy foods. And once you can start putting that all together in the context of how someone says they feel, you start to get a broader picture.

    Cantrell donated his samples hoping they will help medical research, specifically in two areas. Diabetes, which his daughter has, and multiple sclerosis, which he suffers from.

  • GILBERT CANTRELL:

    I want to be able to help somebody else, so they don't have to go through what i've had to go through for the last 23 years.

    The researchers' goals are not to advise any individual how to achieve better health, but to combine DNA analysis, individual medical histories, and environmental measurements over a long period of time. It's like the town has become one giant petri dish.

    However, there are ethical concerns. Participants receive a t-shirt and a 10 dollar Walmart gift card for their samples and nothing more, even if their samples help discover a cure for cancer or any disease. Not only that, they also agree on their eight page consent forms they do not have to be notified or give permission each time their samples are used in a new study. And participants surrender their samples indefinitely, trusting the researchers to do everything they can to protect their anonymity forever.

  • JEAN CADIGAN:

    It's sort of an odd concept, biobanking. It's a fairly new sort of emerging industry.

    Jean Cadigan is an anthropologist who studies research ethics and has interviewed Kannapolis donors. She says the MURDOCK Study consent forms are not unusual for biomedical research.

  • JEAN CADIGAN:

    By and large consent forms for biobanks will say that once you've given over your sample, the university or whatever entity you've given it to owns it now.

  • JOHN LARSON:

    For any purpose?

  • JEAN CADIGAN:

    Yes, for as long as they want. So we like to ask people, you know, "What do you think about that?" And by and large, they say, "What?"

    Because no one can know what a lab that uses a biobank may discover or one day create, Cadigan has concerns about consent forms and says if she were a researcher she would explain consent to new participants like this:

  • JEAN CADIGAN:

    "I can't possibly begin to describe to you what the risks may be. I could make some guesses that privacy would be up there. But beyond that, I don't know what technology is going to be able to do for us five years from now, after you're dead what this may mean for your children that we have your DNA."

  • JOHN LARSON:

    So in other words, I mean, 30 years in the future, your DNA may be trackable by the government, by police authorities, by corporations. So in other words, who knows?

  • JEAN CADIGAN:

    Who knows.

  • JOHN LARSON (TO GILBERT CANTRELL):

    Let me invent a worst case scenario.

  • GILBERT CANTRELL:

    Okay.

  • JOHN LARSON:

    They take your sample, it goes into another study and another study. And eventually somehow your sample helps lead them to a diabetes cure and it's too expensive for your daughter to use?

  • GILBERT CANTRELL:

    Yeah, that would upset me.

    On the other hand, even more upsetting, according Ronald Bailey, a science journalist with Reason Magazine, is the possibility that regulations about privacy or profit-sharing might stymie innovation.

  • RONALD BAILEY:

    We're very early days in a biomedical revolution that is about to skyrocket, and to try to limit now, because of privacy concerns would be to hold back science and to hold back the benefits, possible benefits, enormous benefits to millions of people. And that would be immoral.

  • RONALD BAILEY:

    All this is here nothing bad has happened to me.

    To help convince people that there is nothing to be afraid of, Bailey submitted his own saliva sample to the company "23andme," which analyzed his DNA.

  • RONALD BAILEY:

    I have a high risk of atrial fibrillation.

    A report explained his genetic information, which Bailey posted online for anyone to see.

  • RONALD BAILEY:

    And what I'm hoping will happen is that more and more people like me will in fact provide this information.

  • RONALD BAILEY:

    I think the future is going to be amazing if we will just let it be amazing. If we will get out of its way.

  • JOHN LARSON:

    As for security, MURDOCK Study researchers say they use the strictest levels of encryption, and under the study's protocols, the government cannot come and take the samples.

  • KRISTIN NEWBY:

    When you go into our electronic database, the server that stores all the information, you become a number. So you're disconnected from all of your identifiable information.

  • JOHN LARSON:

    Everything is hackable. But can you feel like you can give them a guarantee?

  • KRISTIN NEWBY:

    I think you can never give somebody a 100 percent guarantee.

    The project developers, however, did promise the campus would revitalize the local economy.

  • KRISTIN NEWBY:

    The campus, was envisioned as an opportunity, a chance to kind of move a kind of devastated community out of that mill background more into a technological future that would be, you know, an investment and a growth opportunity.

  • JOHN LARSON:

    The campus now employs more than 1,000 people, nothing close to the 20,000 jobs on and off campus, Murdock's real estate company predicted. And most employees, highly trained in their fields, come in from out of town. Take a quick walk around Kannapolis, and you see empty stores and hear disappointment.

  • JIM BALL:

    I don't see where it's helped a lot.

  • JOHN LARSON:

    The owner of the Breakfastime diner says the research campus hasn't come close to replacing the mill.

  • ALEXANDER KAZAKOS:

    The mill used to do catering orders every single day of 1,500, 2,500 orders. Then, it just disappeared. And we thought the whole bio campus was gonna benefit everybody, but it's been a slow process.

  • JOHN LARSON:

    The week we visited Kannapolis, researchers said they were closing in on a possible breakthrough in understanding multiple sclerosis. They said they were learning that the disease attacks men and women so differently, that it might be two diseases. Discoveries like that are, of course, the dream of the campus's billionaire founder, David Murdock, and study participants like Gilbert Cantrell.

  • GILBERT CANTRELL:

    I think nothing but good is gonna come out of this research.

  • JOHN LARSON:

    You're in?

  • GILBERT CANTRELL:

    I'm all in.

  • Editor’s Note:

    23andMe does not provide information on risk for cardiac disease.

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