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TR: How do you collect the genetic information you need to cross-reference with the health-care data so that you can actually map genes?

STEFANSSON: We have to get informed consent from people to give their blood, to isolate the DNA, to genotype and then cross-reference that with health-care information. We have so far been collecting DNA simply on the basis of individual diseases we have been studying, and we have DNA from about 50,000 Icelanders. We may go ahead and collect DNA systematically, put an ad in the newspaper and ask people to give blood for this purpose. And actually that would be the least invasive method to obtain DNA. When you’re doing it through physicians who take care of patients and relatives of patients, there is a certain coercion involved because you’re approaching people at a moment of at least perceived need. But eventually, because everyone has a disease and everyone has someone in their family with disease, we would have everything we need to do this systematically, even if we would simply approach them on the basis of diseases.

TR: It would seem risky to have the medical information of every person in the country collected in a central database. For example, people in the United States tend to worry about insurance companies using such information to deny them health-care coverage. How do you take advantage of the potential that lies in this systematic data mining without causing too much danger?

STEFANSSON: I have visited about 25 countries this year, and in every country I come to, I take out my ATM card and withdraw money. I can do that because the entire world is a network of centralized databases of personal information on finance. And the only restriction on my access to your bank account lies in this little card I have. It is much easier to abuse personal information in finance than in health care. You actually have to have a fairly lively imagination to figure out how you can abuse it [in health care]. But the reason we have electronic banking is that we feel it provides such comfort to us that we’re willing to compromise on protection. I’m absolutely convinced that less than one percent of the people in this world would believe that the use of electronic banking is a more noble goal than discovering new knowledge in medicine.

TR: How would you address people’s concerns about this, though?

STEFANSSON: The way to deal with any risk from knowledge is not to forbid the discovery of the knowledge, or the gathering or the storage of information; it is to legislate or regulate how you use it. There are so many reasons to have centralized databases in health care. The one in Iceland can only be used for discovery, and that is unfortunate, because if you have centralized databases in health care, you can provide so much better health care. A colleague of mine, his car hit a tree a couple of years ago and he was seriously wounded, he almost died. When he was brought into the hospital, after he had been peeled out of his car, the hospital knew nothing about him except his name. Imagine if they would simply have been able to put his name into a centralized database and get all the health information there was on him, his parents, his siblings. The power of this is enormous, and are you going to say that we should deny ourselves the opportunities that this brings with it because there may be kooks out there who would want to abuse this? The only kooks that could abuse this would be the kooks in the insurance industry. We can simply regulate that.

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Tagged: Biomedicine

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