Posted for Heidi Ledford

It’s no secret: for years now, the US National Institutes of Health has had a tough case of biobank envy. The United Kingdom has a biobank. So does Japan. And Canada, Iceland, Denmark, and Germany. But a national biobank would come with a hefty pricetag and the United States hasn’t yet committed to the project, although Francis Collins has published a commentary or two about the need for one.

Still, it never hurts to be prepared. Last Saturday, researchers held the first of five town-hall meetings to find out how the US public would feel about participating in a national biobank. The inaugural meeting was in Kansas City, Missouri, with additional meetings to come in Arizona, Oregon, Pennsylvania, and Mississippi.

A national biobank would compile medical information from hundreds of thousands of participants, and would store blood and other biological samples for future analysis. Such problems inevitably raise questions about privacy protection and so, for the past few years, researchers like Joan Scott of Johns Hopkins University have been consulting the public to learn what concerns would-be biobank participants would have.

Within the US, there are already several large, prospective health studies in progress. But these independent projects have not standardized their enrollment criteria or reporting procedures, making them difficult to lump together into a single analysis. The independent studies also don’t reflect the full demographic diversity of the country, and tend to focus on specific diseases. A national biobank could correct that, argues Collins (pictured left).

Scott and her colleagues have already interviewed focus groups, and assembled over 4,000 responses to a written survey. So before the meeting on Saturday, Scott already had a taste of what to expect. Privacy issues were key, she said – no surprise there. But what she did find interesting was the focus on accountability. Scott notes that her interviewees often referred to a patient consent form as a ‘contract’, and wanted to know: if a person’s privacy is violated, whom can they hold legally responsible?

Many people were also interested in directly reaping the benefits of their participation. “In the usual paradigm of research, you never gave participants the results,” says Scott. But in her interviews, she found that people were very interested in getting information about themselves.

Meanwhile, the meeting on Saturday seems to have been a success, with over a hundred people in attendance. 73% of them said the US “definitely” or “probably yes” should have a biobank.

But only 57% said they “definitely” or “probably would” participate in it.

Images: NIH