Patient Perceptions on the Advancement of Noninvasive Prenatal Testing for Sickle Cell Disease among Black Women in the United States

Authors

Shameka P Thomas
Faith E Fletcher
Rachele Willard
Tiara Monet Ranson
Vence L Bonham

Publication Date

1-1-2024

Journal

AJOB Empirical Bioethics

DOI

10.1080/23294515.2024.2302996

PMID

38349128

PMCID

PMC12057698

PubMedCentral® Posted Date

5-7-2025

PubMedCentral® Full Text Version

Author MSS

Published Open-Access

yes

Keywords

Humans, Female, Anemia, Sickle Cell, Noninvasive Prenatal Testing, Pregnancy, Adult, United States, Black or African American, Qualitative Research, Prenatal Care, Prenatal Diagnosis, Genetic Testing, Decision Making, Perception, Young Adult, Noninvasive prenatal testing, Black women, sickle cell disease, reproductive health equity

Abstract

Background: Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic conditions, is increasingly being implemented as a part of routine prenatal care screening in the United States (US). However, these advances in reproductive genetic technology necessitate empirical research on the ethical and social implications of NIPT among populations underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).

Methods: Forty (N = 40) semi-structured interviews were conducted virtually with Black women in the US (19 participants with SCD; 21 participants without SCD) from June 2021 to January 2022. We employed a qualitative approach to examine the study participants' perceptions of the potential advancement of NIPT for screening SCD in the fetus. Data were analyzed using NVivo 12 qualitative software.

Results: The themes revealed the complexities involving the intersectional lived experiences of SCD, prenatal care, lack of synergy among health providers, and NIPT decision-making. The results further revealed that even when Black women have shared commonalities in their lived experiences while navigating SCD and motherhood, their perceptions of NIPT screening technologies are divergent.

Conclusion: Expanding the ethical discourse on the social implications of NIPT is critical to fully elucidate how Black women perceive NIPT's utility, particularly as NIPT advances to screen for SCD in the fetus. Neglecting to include Black women with genetic conditions in empirical studies on NIPT may contribute to ongoing health inequities and limit and constrain reproductive choices among Black women with and without SCD.