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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: The Goldilocks Conundrum: Disclosing Discrimination Risks in Informed Consent


ELSIcon2022 • Paper • June 2, 2022

Wendy Uhlmann, Sonia Suter, Aaron Scherer, Anya Prince

Studies have shown that fear of genetic discrimination lowers participation in genomic research and clinical testing. Most notably, people are fearful of how life, long-term care, and disability insurers may use genetic information. Arguably, however, this fear is simultaneously overbroad and too limited. It is too broad because there is little evidence of actual incidences of discrimination, so some argue that it is irrational or counterintuitive to forego testing out of fear of an unlikely event. It is too limited because federal and state law generally only restricts health insurers and employers from considering genetic testing. It does not restrict other actors, such as lenders, auto or homeowners insurers, or educational institutions from discriminating on the basis of genetics. Where does this relatively targeted fear of discrimination come from? One potential answer is that individuals focus on life, long-term care and disability insurers because providers and researchers specifically raise these entities when patients and participants are considering genetic testing. Indeed, the Office for Human Research Protections recommends that informed consent documents include language about how federal genetic anti-discrimination laws do not extend to life, long-term care, and disability insurers. This presentation reports on a national survey (n=1195) of a population with a mean age of 45.9 (SD=17.9) years, 51.3% female, and 36.7% non-Hispanic White. We measured how alterations of standard informed consent language about legal protections affect fear of genetic discrimination and willingness to participate in a hypothetical genomics research study.


Stigma and discrimination
Genetic testing and screening

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