Exploring the motivations of research participants who chose not to learn medically actionable secondary genetic findings about themselves

Reevaluating the “right not to know” in genomics research

“…For participants who consent to participate, personalized information about that particular gene and condition could be offered at the time of recontact. The report by Schupmann et al 4 empirically strengthens this argument by showing that the initial rejection of genomic information is not particularly stable and may change over time or when more information is provided.…”

“…Moreover, the value of a given piece of genomic information and the life experience of a research participant change over time. The data from Schupmann et al 4 illuminate how dramatically participant opinions on genetic information can change over time. The National Institutes of Health-funded All of Us Research Program asks participants to opt into receiving risk variants in the initial consent process, and then the protocol attempts to provide an easy way to revisit their choices.…”

“…The "right not to know" has legal, philosophical, and ethical foundations that have been thoughtfully reviewed in an analysis by Benjamin Berkman, 8 the senior author of the Schupmann et al paper. 4 Among the ideas in that analysis is the notion that, although complete autonomy may be unachievable, autonomy can be maximized only when the information necessary to make a decision is present. Berkman also argues that the constitutionally protected right to refuse medical treatment is grounded in protecting bodily integrity and cannot be easily analogized to the return of genomic results, in which only psychological integrity is involved.…”

“…The report by Schupmann et al 4 begins to address this question. The authors contacted more than 150 participants in a genomic research study who initially declined genetic results ("refusers") and a cohort of individuals who had accepted them (acceptors).…”

“…Participants who decline the return of genomic information about themselves in research are said to be asserting their autonomy around the "right not to know." The recent report by Schupmann et al 4 challenges this paradigm by showing that participants' decisions about receiving unanticipated genomic information in research may change when they are given more information and an opportunity to reconsider. These findings prompt us to ask if we can expand autonomy by offering participants opportunities to change their choices, given new experiences in their lives or advances in medical science.…”