Journal article
The goldilocks conundrum: Disclosing discrimination risks in informed consent
Journal of genetic counseling, Vol.31(6), pp.1383-1393
12/2022
DOI: 10.1002/jgc4.1613
PMCID: PMC9722586
PMID: 35930740
Appears in UI Libraries Support Open Access
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.
Details
- Title: Subtitle
- The goldilocks conundrum: Disclosing discrimination risks in informed consent
- Creators
- Anya E. R. Prince - University of IowaSonia M. Suter - George Washington UniversityWendy R. Uhlmann - University of MichiganAaron M. Scherer - University of Iowa
- Resource Type
- Journal article
- Publication Details
- Journal of genetic counseling, Vol.31(6), pp.1383-1393
- DOI
- 10.1002/jgc4.1613
- PMID
- 35930740
- PMCID
- PMC9722586
- NLM abbreviation
- J Genet Couns
- ISSN
- 1059-7700
- eISSN
- 1573-3599
- Publisher
- Wiley
- Number of pages
- 11
- Grant note
- National Human Genome Research Institute (R00HG008819)
- Language
- English
- Date published
- 12/2022
- Academic Unit
- General Internal Medicine; Law Faculty; Internal Medicine
- Record Identifier
- 9984323230702771
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