Centering Reproductive Health of Black Women with Sickle Cell Disease with Dr. Shameka Poetry Thomas

Bioethics in the Margins

Dr. Shameka Poetry Thomas is a medical sociologist with special interest in reproductive justice and genetics technology as well as the intersection of maternal healthcare with sickle cell disease. After receiving her Ph.D. from the University of Miami, she completed her two-year postdoctoral fellowship at the National Institutes of Health (NIH)/National Human Genomics Research Institutes (NHGRI).

In this episode, Dr. Thomas centers the experiences of pregnant Black women with sickle cell disease, who, despite advances in medicine, genetics and reproductive technology, have been neglected by research communities due to intersecting marginalized identities despite high mortality during pregnancy and childbirth. Dr. Thomas walks us through what non-invasive prenatal testing (NIPT) is and how it relates to sickle cell disease specifically. Her work comes to life by illustrating the converging effects of colonialism, racism, bias and stigmatization through moving real-world stories. Her research sheds light on the lived experiences of patients who are left to integrate complex information from multiple specialists to interpret meanings for themselves, their families, their finances and their communities in the setting of collective and individual trauma. She describes the importance of using qualitative research methods to explore a range of experiences within groups rather than treating groups as a monolith. She also acknowledges the heaviness of this type of qualitative work and the importance of dissemination of findings to spark action.

Dr. Thomas connected the long history of research abuses in the US to current-day research practices that continue to disrespect Black women. For example, recent sickle cell disease NIPT research was conducted without incorporating the unique lived experiences of the affected women to understand whether and how to incorporate these technologies into practice. She emphasized the urgent need for the development and implementation of more comprehensive ethical guidelines in the field of reproductive health. These guidelines should specifically address the ethical dimensions of research on sickle cell disease and the burgeoning field of genetic technology, ensuring that the rights, dignity, and well-being of those affected particularly within marginalized communities. Finally, Dr. Thomas called for more robust advocacy efforts aimed at amplifying the voices of Black women and other marginalized groups in the creation of healthcare policies and research priorities. Such advocacy must not only challenge existing inequities but also ensure that affected communities have the power and agency to influence decisions that impact their lives, fostering a healthcare system that is equitable, inclusive, and just.

Read Dr. Thomas's work here:

Thomas SP, Fletcher FE, Willard R, Ranson TM, Bonham VL. Patient Perceptions on the Advancement of Noninvasive Prenatal Testing for Sickle Cell Disease among Black Women in the United States. AJOB Empir Bioeth. 2024 Apr-Jun;15(2):154-163. doi: 10.1080/23294515.2024.2302996. Epub 2024 Feb 13. PMID: 38349128.

Thomas SP. Trust Also Means Centering Black Women's Reproductive Health Narratives. Hastings Cent Rep. 2022 Mar;52 Suppl 1:S18-S21. doi: 10.1002/hast.1362. PMID: 35470876.

Fletcher F, Thomas SP, Lapite FC, Ray K. Bioethics Must Exemplify a Clear Path toward Justice: A Call to Action. Am J Bioeth. 2022 Jan;22(1):14-16. doi: 10.1080/15265161.2021.2001113. PMID: 34962203; PMCID: PMC9302876.