The goldilocks conundrum: Disclosing discrimination risks in informed consent.

ABSTRACT: Informed consent is a foundational ethical and legal principle in human subjects research and clinical care. Yet, there is extensive debate over how much information must be disclosed to meet ethical goals and legal requirements, especially about non-medical risks. In this online, survey-based experiment of a diverse sample of the US general population, we explored one aspect of this debate by testing whether the level of detail included in informed consent regarding genetic anti-discrimination protections alters individuals' willingness to participate in a hypothetical research study and their concerns regarding genetic discrimination. Participants were randomized to receive sample informed consent language with one of three levels of disclosure regarding the protections and limitations o

SUBMITTER: Prince AER 

PROVIDER: S-EPMC9722586 | biostudies-literature | 2022 Dec

REPOSITORIES: biostudies-literature