Addressing Reproductive Healthcare Disparities through Equitable Carrier Screening: Medical Racism and Genetic Discrimination in United States’ History Highlights the Needs for Change in Obstetrical Genetics Care

Aishwarya Arjunan, Deanna R. Darnes, Katelynn G. Sagaser and Ashley B. Svenson
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Aishwarya Arjunan: Medical Affairs, GRAIL, LLC, Menlo Park, CA 94025, USA
Deanna R. Darnes: Fetal Care Center Dallas, Dallas, TX 75230, USA
Katelynn G. Sagaser: Department of Gynecology & Obstetrics, Division of Maternal-Fetal Medicine, Johns Hopkins University School of Medicine, Baltimore, MD 21287, USA
Ashley B. Svenson: Myriad Women’s Health, Salt Lake City, UT 84108, USA

Societies, 2022, vol. 12, issue 2, 1-17

Abstract: Carrier screening, a nearly half-century old practice, aims to provide individuals and couples with information about their risk of having children with serious genetic conditions. Traditionally, the conditions for which individuals were offered screening depended on their self-reported race or ethnicity and which conditions were seen commonly in that population. This process has led to disparities and inequities in care as the multi-racial population in the U.S. has grown exponentially, yet databases used to determine clinical practice guidelines are made up of primarily White cohorts. Technological advancements now allow for pan-ethnic expanded carrier screening (ECS), which screens for many conditions regardless of self-reported race or ethnicity. ECS presents a unique opportunity to promote equitable genetic testing practices in reproductive medicine. However, this goal can only be achieved if we acknowledge and appreciate the innumerable inequities evidenced in reproductive medicine and other socio-legal practices in the United States, and if we intentionally work in concert with healthcare providers, policy makers, advocates, and community health champions to reduce current and future reproductive health disparities. Herein, we provide a brief review of the way that US medical racism and genetic discrimination has shaped the current landscape of carrier screening.

Keywords: expanded carrier screening; ethnic carrier screening; health equity; prenatal genetic testing; health disparities; genetics; medical racism; genetic discrimination (search for similar items in EconPapers)
JEL-codes: A13 A14 P P0 P1 P2 P3 P4 P5 Z1 (search for similar items in EconPapers)
Date: 2022
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