While considerable debate has swirled around the issue of how to manage IFs and IRRs in human subjects research generally, there has been much less debate over biobank responsibilities. To ground our discussion of biobank responsibilities, we conducted research on current biobank policy. That research is described in greater detail in Johnson, Lawrenz & Thao.3 In 2009-10, we assembled a sample comprised of 3 types of biobanks: NIH intramural (43 biobanks), other U.S. biobanks not coordinated intramurally through NIH (66 biobanks), and non-U.S. biobanks (12 biobanks). A total of 2,366 documents were collected from the websites of the 43 NIH intramural and 12 non-U.S. biobanks plus a random sample of 30 of the other U.S. biobanks, for a total of 85 biobanks. Supplemental e-mail solicitations were sent to each biobank to request additional documents not publicly available on the biobank’s website. Forty-six biobanks responded to the request and sent a total of 29 additional documents, for a response rate of 54% to the e-mail request. Here we briefly summarize relevant findings from the U.S. biobanks only.
