paperKB
coga / coga-kb
Help
Sign in

Chunk #64 — 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

Early work on return of IFs and IRRs commonly did not separate this step from analyzing a particular finding for potential return. However, the major recommendations that have emerged thus far on return of IFs and IRRs are framed in terms of general criteria for return rather than a specific list of which genetic, genomic, and other findings should be returned.1,75,86,90 There are good reasons for this. Principled resolution of the IFs and IRRs issues requires first some consensus on what general kinds of findings are appropriate for return. Because recommended criteria for return commonly focus on questions such as whether the meaning of the finding is established and its health or reproductive implications understood, whether the health or reproductive implications of the finding are significant, and whether return is “actionable” and thus can benefit the contributor, the specific genetic, genomic, and other findings that qualify will change with increasing knowledge. Thus, Fabsitz et al.86 urge creation of a central advisory committee that can offer advice on what genetic and genomic findings are sufficiently well understood, significant, and actionable to