The REAP Study: Returning Estimates of Ancestry to Participants

Award amount: 40,000.00

Janet Shim, PhD, Recipient

The Women's Interagency HIV Study (WIHS) is a longitudinal cohort study of women with HIV, and a risk-set match control group; the women enrolled are primarily African American and Latina, with a small number of Asian and Caucasian non-Hispanic women. In Fall of 2011, the WIHS National Community Advisory Board (NCAB) requested to receive their individual estimates of ancestry admixture that are being used as covariates in genomic studies. There is almost no empirical evidence that can guide WIHS investigators in addressing questions of when and how to return ancestry estimates to research participants, what the impacts for participants might be, and how to reduce the possibilities for unintended consequences. Therefore we propose a one-year, qualitative pilot study whose Specific Aims are: (1) To describe NCAB members' expectations of and desires for their ancestry estimates, and their experiences receiving those estimates; and (2) To track over time their understandings of, psychosocial and emotional reactions to, and valuing of ancestry information. This study will involve: a planning process in partnership with WIHS NCAB and PIs; in-depth interviews with NCAB members prior to receiving their ancestry estimates; observation of the return of ancestry results; in-depth interviews within 1-2 days after the return of results sessions, and again within 2-4 months. All interviews and observations will be audio-recorded, transcribed, and uploaded into Atlas.ti software. Analysis will be based on the principles of grounded theory. This study will track longitudinally participants' evolving understandings of and reactions to their ancestry estimates, and the impacts they have on their self-identity or community affiliations. In doing so, it will provide the basis for the development of a process for offering and returning ancestry results to WIHS participants. The pilot study will also yield preliminary data for a planned future R01 application.