Chunk #43 — 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 biobank research systems
Core issues addressed in discussions of biobank ethics include consent and withdrawal of consent; protection of privacy and confidentiality; ownership of data and samples, benefit sharing, and commercialization; and sharing of data and samples with other researchers. Less discussed have been biobank ethical responsibilities with respect to return of IFs and IRRs. Boggio74(pp194, 195) reports a division of view among respondents in a sample including U.S. and international biobank experts: To “a substantial number of respondents….beneficence requires that information potentially of use to participants ought to be passed on to them…. This trend is counteracted by the view—also popular among respondents—that returning research results is beyond a biobank’s duty and/or sharing results could do more harm than good.” The author notes, however, that several respondents suggested that preserving the capacity to return IRRs militated “in favor of forms of reversible anonymization of samples and associated data.”74(p189,n1)
