U.S. seeks input on national biobank

Alan Bavley of McClatchy Newspapers writes:

In large upright freezers, researchers at St. Luke’s Hospital are stashing tens of thousands of tiny tubes that will hold blood samples of up to 2,000 people.

It’s a major project to study patients’ medical charts and look for the genes and blood proteins that put people with diabetes at risk of heart disease.

Now imagine a bank of freezers with samples from 250 or even 500 times as many people, up to a million volunteers from across the United States. A biobank so large it could help scientists unlock the secrets not only of diabetes, but of many other common diseases.

That is the dream of researchers at the National Institutes of Health. They have been talking about creating just such a national biobank.

Now they want to know what you think.

This month, Kansas City area residents had the opportunity to get in on the discussion at a town-hall meeting. Other town-hall meetings will take place over the next two months in Phoenix; Jackson, Miss.; Portland, Oregon; and Philadelphia.

The creation of biobanks raises ethical, legal and financial issues: How do you maintain the privacy of thousands of records? Who gets to use the data? Who benefits from it?

So before asking Congress for the tens of millions of dollars it would take to fund a huge biobank, the NIH is testing public opinion with meetings and focus groups.

Full Story – bnd.com

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