"Lord Knows What's Being Done with My Blood!": Black Women's Perceptions of Biospecimen Donation for Clinical Research in the United States.

PURPOSE: Black women are underrepresented in clinical research and clinical trials. Knowledge gaps lead to biased clinical practice and care. There is a small but growing body of literature on Black women's perceptions about participation when biospecimen donation is sought by researchers. This is the first known study to investigate willingness to participate in clinical research involving biospecimen donation among Black women of reproductive age in the United States. METHODS: This cross-sectional study recruited 496 Black women (ages 18-49) from a research crowdsourcing platform. Participants completed a 46-item online survey which asked about their willingness to provide blood samples for clinical health research and reasons for their willingness or for any unwillingness. Descriptive statistics and thematic analysis method were used to analyze the data. RESULTS: Less than half (44%) of participants reported willingness to provide blood samples for clinical research. The most common concerns of those expressing unwillingness to provide samples were "fear of blood sample being misused" and "distrust with the health researchers handling the samples." We identified six qualitative themes from the analysis of participants' open-ended responses. The most important factors include a desire for integrity and transparency in research, institutional racism contributing to mistrust, and adequate compensation and clearly defined benefits to participation. CONCLUSIONS: The recruitment and engagement of Black women in clinical biospecimen research should involve transparent, trustworthy, and anti-racist practices and informed respect for Black women's autonomy. There is a need to address Black women's concerns about exploitative profits and mistrust of academic and medical institutions.

Trust Also Means Centering Black Women's Reproductive Health Narratives.

This commentary responds to Yolonda Wilson's article "Is Trust Enough? Anti-Black Racism and the Perception of Black Vaccine 'Hesitancy'" by connecting mistrust to the phenomenon in the United States of blaming Black women for their own adverse health outcomes, particularly in the context of maternal and reproductive health. When medical practitioners and researchers fail to recognize and understand the racist social context of health problems, Black women and other minoritized groups are socialized to mistrust their bodies; as a result, these groups can come to mistrust medical institutions, and medical institutions to distrust patients from these groups. Highlighting the disproportionately and unjustly high maternal mortality rates among Black women, this commentary warns that neglecting to center the narratives of Black women tells an incomplete story of reproductive health disparities in the United States. Drawing on firsthand experience conducting qualitative reproductive-health research with Black women, the author urges professionals in reproductive medicine and bioethics to use the tools of narrative medicine to listen to and center Black women's accounts of their lived experiences in order to deconstruct blame and work toward eliminating reproductive health disparities.

Street-Race in Reproductive Health: A Qualitative Study of the Pregnancy and Birthing Experiences among Black and Afro-Latina Women in South Florida.

OBJECTIVE: The lived-experience of race and racism among historically vulnerable populations needs critical examination in the United States' (US) maternal and reproductive healthcare system. This study aims to measure how street-race influences the experiences of pregnancy and birthing among Black and Afro-Latina women in the South Florida region. Street-race, in this study, focuses on the lived experiences of phenotype and colorism (as real consequences due to structural racism) imposed on women during clinical encounters. METHODS: Twenty-five women who self-reported their racial and street-identity as Black and / or Afro-Latina were interviewed, utilizing the qualitative approaches of narrative medicine and phenomenology. Study participants also had to have at least one recent pregnancy or birth of a living child (< 24 months). RESULTS: Adverse maternal mortality outcomes also do not tell the full story of what it means to be Black while giving birth in North America. The dominance of White-presenting Latinx individuals in South Florida (a seemingly "diverse" urban region) is also historical and persistent. These oppositional consequences at the clinical encounter, regarding street-race, further illustrate how White-dominance (via phenotype and skin color) are ever-present across US healthcare institutions serving pregnant women. RELEVANCE: The lived experience of hegemonic racial hierarchies (e.g., Black and White), ongoingly contributes to the racialization of maternal and reproductive healthcare in the US, as more attention is needed to achieve health equity.