Chunk #38 — 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
Illes et al.25 maintain that researcher duties to manage and offer return of IFs flow from ethical duties to respect participant autonomy and interests. They suggest that researchers, whose work depends on the generosity of research participants and their willingness to be part of research, bear a duty of reciprocity. Kohane et al.47(p837) argue that offering discoveries back to individual research participants allows them to be “partners in research rather than passive, disenfranchised purveyors of biomaterials and data.” The empirical literature to date shows that many individuals say they do indeed want to receive their IFs and IRRs, especially if researchers find something serious.29,32–36
