ELSIcon2024: Legal Protections Against Genetic Discrimination: Awareness Among Adults and Adolescents with Psychiatric Conditions and Caregivers

ELSIcon2024 • Paper • June 11, 2024 

Authors:

Speaker: Ana Lucia Battaglino, MA (she/her/hers) – Harvard University

Advancements in genetic research have provided insights into psychiatric conditions and raised concerns about the potential misuse of genetic information in various contexts, including employment and insurance. The Genetic Information Non-Discrimination Act (GINA) was enacted in 2008 with the aim of protecting individuals from discrimination based on their genetic information but is limited in scope. This study explores attitudes toward and awareness of protective legislation among stakeholders who could be impacted by discrimination if they were to seek genetic testing. We recruited adults with psychiatric conditions (AP), adolescents with psychiatric conditions (AD), and their caregivers (CG) to participate in 50-minute interviews (n=89). Participants were asked about their perceptions of the risks of genetic testing and their awareness of any regulation protecting individuals from genetic discrimination. Only 3% of participants said that they were certain they knew of protective legislation (3/89), with one participant mentioning GINA by name. No adolescents were familiar with protective legislation. However, 24% of all participants mentioned other laws that they thought might protect individuals from genetic discrimination (21/89). 12% said that legal protections against genetic discrimination should exist (11/89), 10% assumed that these protections exist (9/89), and 6% asked follow-up questions or said they would want to know more (5/89). These results suggest that stakeholders are unsure about what kinds of characteristics may be protected against discrimination in different contexts or what kind of information is considered private health information; these findings should inform informed-consent practices when genetic testing is offered in clinics.

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