paperKB
coga / coga-kb
Help
Sign in

Chunk #72 — PART II. CORE QUESTIONS — F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them — Step 1: Clarifying the criteria and roster

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

Text

to conditions that are life-threatening or grave. A significant majority of our group, however, supported moving to “substantial risk of a serious health condition,” in greater alignment with Fabsitz et al. In any case, the core question, as we suggested in our prior project’s paper,1 is whether return offers strong net benefit from the contributor’s perspective. Evaluating net benefit from the contributor’s perspective can be done in several ways: by asking individual contributors, by conducting research on the contributor population to ascertain prevalent views, or by asking the biobank’s ICOB or other return of results committee (ideally in concert with a community engagement committee) to perform the evaluation as best they can from the standpoint of a reasonable contributor in that biobank research system.