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- Title
The goldilocks conundrum: Disclosing discrimination risks in informed consent.
- Authors
Prince, Anya E. R.; Suter, Sonia M.; Uhlmann, Wendy R.; Scherer, Aaron M.
- 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 of the Genetic Information Nondiscrimination Act (GINA). Our sample (n = 1,195) had a mean age of 45.9 (SD = 17.9) years and 40% with ≤high school education. Participants were 51.3% female and 36.7% non‐Hispanic White. On average, those who received consent language with none of GINA's limitations highlighted were more willing to participate than those who were warned about various gaps in GINA. They also had significantly lower perceived risk of discrimination than those presented with the most information about limitations. Our study found that providing more comprehensive information about GINA notably lessened willingness to participate in the hypothetical studies, highlighting the need for clinicians and researchers to thoughtfully consider how to disclose anti‐discrimination risks in informed consent.
- Subjects
UNITED States; STATISTICS; HUMAN research subjects; DISCRIMINATION (Sociology); ONE-way analysis of variance; MULTIPLE regression analysis; ATTITUDE (Psychology); GENETIC testing; HEALTH Insurance Portability &; Accountability Act; RISK assessment; INFORMED consent (Medical law); SURVEYS; T-test (Statistics); HEALTH literacy; RISK perception; SELF-disclosure; GENETIC privacy; QUESTIONNAIRES; SCALE analysis (Psychology); DESCRIPTIVE statistics; STATISTICAL sampling; THEMATIC analysis; DATA analysis; PERCEIVED discrimination; GENETIC research
- Publication
Journal of Genetic Counseling, 2022, Vol 31, Issue 6, p1383
- ISSN
1059-7700
- Publication type
Article
- DOI
10.1002/jgc4.1613