ELSIcon2022 Paper: Is Non-invasive Prenatal Testing Really Invasive? Examining Black Women’s Perceptions of Non-Invasive Prenatal Testing for Sickle Cell Disease

ELSIcon2022 • Paper • June 3, 2022

Presented by: Shameka Poetry Thomas

Non-invasive prenatal testing (NIPT) has become standard prenatal care in the United States and is currently being developed to screen for sickle cell disease (SCD). NIPT is considered non-invasive because it utilizes cell-free DNA to detect for genetic conditions and reduces procedure-related miscarriages. Most clinical trials on NIPT predominately enroll White cohorts, structurally excluding the varied experiences of Black women. To date and to our knowledge, there have not been any ELSI studies that measure the perceptions of NIPT among Black women with SCD. This study examines the social implications that can potentially make NIPT decision-making processes psychologically invasive for Black women (with and without SCD). Racial disparities regarding how Black women navigate and negotiate NIPT are critically investigated in this study, as patient-perceptions of NIPT vary across social identities and illness experiences. Our study design utilizes a narrative-medicine approach that allows Black women to interpret their own health experiences. Data collection consisted of 40 semi-structured interviews, including 20 participants with SCD and 20 without SCD. Preliminary results show four preliminary dominant themes: 1) navigating SCD and prenatal care; 2) perceptions of NIPT; 3) lived-experiences with SCD; and 4) NIPT decision-making. These findings are important as intersecting social factors (e.g., racism, sexism) in high-risk pregnancies can adversely impact health outcomes. In this paper, we argue that the field needs to integrate a social-scientific framework in reproductive technology that contextualizes how decision-making regarding NIPT can directly (and indirectly) impact the lived-experiences of Black women.