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

ABSTRACT:

Purpose

Proposals to return medically actionable secondary genetic findings (SFs) in the clinical and research settings have generated controversy regarding whether to solicit individuals' preferences about their "right not to know" genetic information. This study contributes to the debate by surveying research participants who have actively decided whether to accept or refuse SFs.

Methods

Participants were drawn from a large National Institutes of Health (NIH) environmental health study. Participants who had accepted SFs (n = 148) or refused SFs (n = 83) were given more detailed information about the types of SFs researchers could return and were given an opportunity to revise their original decision.

Results

Forty-one of 83 initial refusers (49.4%) opted to receive

SUBMITTER: Schupmann W 

PROVIDER: S-EPMC8633056 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature