Chunk #40 — PART II. CORE QUESTIONS — D. If Data and Samples Can Be Re-identified, Are There Any Biobank Research System Responsibilities to Offer Return of IFs and IRRs? — The ethics of return in individual studies
Some authors, however, have argued against return, or at least against return beyond the most urgent and actionable findings. These authors caution that research budgets are limited and should be devoted to the central aim of research, creating generalizable knowledge. They worry that return of individual findings will divert scarce resources, invite research participants to mistake research for clinical care, and may involve return of findings that are not yet adequately understood and validated.52 Yet even authors expressing concern over individual research findings tend to allow for return of some findings. Thus, within the United States and beyond, a growing number of authors maintain that researchers indeed should consider some subset of findings for return to research participants, even if there is not yet agreement on what set.1,19,53–58 Less discussed (especially in the United States) are the responsibilities of biobanks faced with these issues, as well as the responsibilities of what we are calling secondary researchers, though that conversation is beginning.19,24,57 We address the responsibilities of biobanks and secondary researchers in turn.
