ELSIcon2022 Paper: Return of Secondary Genomic Findings: Experiences of Sickle Cell Disease Research Participants

ELSIcon2022 • Paper • June 2, 2022

K. Jameson Floyd, Ashley Buscetta, Vence Bonham

While the body of research investigating research participants’ views on the return of actionable secondary genomic findings results (RoR) grows, there has been limited study of individuals who are underinsured and/or already living with a chronic genetic condition, such as sickle cell disease (SCD). As RoR in genomics research is increasingly incorporated in studies, it is imperative that the views and attitudes of diverse research participants be investigated and understood. This qualitative study of adult SCD research participants (n=40) was conducted in 2021-2022 with the aim of exploring their views and attitudes regarding RoR. The study includes research participants with disparate insurance coverage (uninsured, Medicaid, Medicare, and/or employer-based insurance). Each participant completed a genomic literacy assessment and a semi-structured interview. Preliminary results suggest that adults living with SCD support the return of secondary findings (SF) from genomic sequencing, and envision few harms associated with RoR. Study findings adopt the view that already living with a chronic genetic condition may reduce potential psychological burden of receipt of SF. Study participants demonstrated sufficient knowledge of genetics and genomics, which may contribute to positive outlook on RoR. Emerging themes from the study findings include the expectation that researchers should provide referrals to health care specialists, physical and mental health support, as well as downstream financial support for uninsured study participants. Understanding the views of diverse research participants based upon race, ethnicity, genetic condition, and insurance coverage is important in the developing body of research on return of secondary genomic sequencing results.