paperKB
coga / coga-kb
Help
Sign in

Chunk #53 — PART II. CORE QUESTIONS — E. Should the Biobank Itself Have Responsibilities for Managing Return?

Source
Managing incidental findings and research results in genomic research involving biobanks and archived data sets.
Embedded
yes

Text

Moreover, even when de-identification by the primary researcher means that the biobank cannot re-identify and recontact the contributor, the question of biobank responsibilities remains. Re-identification and recontact are only the final phases of return of IFs and IRRs. Prior steps are deciding whether any IFs and IRRs should be returned, establishing the criteria to be used in ascertaining what findings are returnable, and analyzing particular findings to decide whether those specific IFs or IRRs should be returned. The fact that the biobank itself may not be able to re-identify and recontact does not answer the question of whether it bears some responsibility to determine whether any return will be offered, address the question of what criteria should be used to distinguish returnable findings, and analyze particular findings in the biobank’s research and possibly secondary research as well, as discussed below. In fact, a careful reading of both the NHGRI and NIH policies above shows that they recognize this potential division of labor. Both suggest that at least secondary investigators may indeed discover findings that raise the question of potential return,