Building trust between academic medical centers and certain communities they depend on in the research process is hard, particularly when those communities consist of minoritized or historically marginalized populations. Some believe that engagement activities like the creation of advisory boards, town halls, or a research workforce that looks more like community members will establish or reestablish trust between academic medical centers and racialized communities. However, without systematic approaches to dismantle racism, those well‐intended actions become public performativity, and trust building will (...) fail. In this essay, we draw upon foundational ethical principles of trust, distrust, and trust building; apply the concept of bounded justice to performative trust acts; and center the works of Black and Indigenous feminist bioethicists to revisit some of the wisdom and valuable lessons they have contributed. Rebuilding trust is hard to do because people and institutions are often not honest about how hard it is and there is no simple box‐checking task that can disentangle our society's injustices, but there are steps to take in this direction. Individuals and institutions can recognize valuable relevant work that has already been written, partake in critical reflection, and then apply insights gained to take both small and sustainable steps toward transformational change and deeper trust. (shrink)

Recent calls to address racism in bioethics reflect a sense of urgency to mitigate the lethal effects of a lack of action. While the field was catalyzed largely in response to pivotal events deeply rooted in racism and other structures of oppression embedded in research and health care, it has failed to center racial justice in its scholarship, pedagogy, advocacy, and practice, and neglected to integrate anti-racism as a central consideration. Academic bioethics programs play a key role in determining the (...) field’s norms and practices, including methodologies, funding priorities, and professional networks that bear on equity, inclusion, and epistemic justice. This article describes recommendations from the Racial Equity, Diversity, and Inclusion (REDI) Task Force commissioned by the Association of Bioethics Program Directors to prioritize and strengthen anti-racist practices in bioethics programmatic endeavors and to evaluate and develop specific goals to advance REDI. (shrink)

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. (shrink)