A one-million-subject study in the US?

The NIH just put out a draft report outlining the issues involved with launching a large US population study to find links between genes, environment and disease. Since the study could include as many as 1 million subjects, it looks like the NIH is trying to think through these issues thoroughly before deciding whether to try such an ambitious and expensive project. Not a bad idea. The report is open for public comment.

Interesting to see that the NIH seems to be making some moves on this, since Francis Collins wrote in Nature in 2004, calling for such a study in the US (following the examples of Iceland, the UK, Estonia and other places that have started large population/biobank projects).

There are lots of questions that need to be answered: study design, who to enroll, ethics and informed consent, intellectual property rights, etc etc etc. But I think the most interesting questions will be about how to engage the American public and get public buy-in for such a large, sweeping project.

And would the cost and time of such a study be worthwhile? Would it give us the answers we’ve been promised since the human genome was first decoded?

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