Chunk #79 — 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
Translating criteria into a roster of returnable IFs and IRRs that trigger a responsibility to return or the option of discretionary return is an effort with the potential to simplify the ethical task of deciding whether to offer IFs and IRRs and create some consistency across biobanks and studies. As noted above, some commentators have suggested creating a central advisory body to assemble such a roster nationally and refine it over time as new genetic and genomic tests are understood, their meaning established, and their analytic validity determined.86 We too endorse this recommendation, but note the limits of such an effort. The roster envisioned is a starting point, not an end-point, for ethics deliberation tailored to individual biobanks and study populations. Important research is under way and will continue on what findings different study populations and individuals regard as valuable for their own health, reproductive decision-making, and personal life (and death) planning.
