Applying a Health Equity Lens to Better Understand End-of-Life Prognostication.

Racial and ethnic inequity exists throughout the lifespan, including at the end of life (EOL). Although prognostication is inherently fraught with uncertainty, many underrepresented minorities get prognoses that are overly optimistic, which can exacerbate inequity by depriving patients of details needed to make informed decisions and plan for EOL care. This article applies a health equity lens to facilitate better ethical and clinical understandings of how to care for patients of color more equitably at the EOL.

Racial Equity, Diversity and Inclusion in Bioethics: Recommendations from the Association of Bioethics Program Directors Presidential Task Force.

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.

Advancing genomics to improve health equity.

Health equity is the state in which everyone has fair and just opportunities to attain their highest level of health. The field of human genomics has fallen short in increasing health equity, largely because the diversity of the human population has been inadequately reflected among participants of genomics research. This lack of diversity leads to disparities that can have scientific and clinical consequences. Achieving health equity related to genomics will require greater effort in addressing inequities within the field. As part of the commitment of the National Human Genome Research Institute (NHGRI) to advancing health equity, it convened experts in genomics and health equity research to make recommendations and performed a review of current literature to identify the landscape of gaps and opportunities at the interface between human genomics and health equity research. This Perspective describes these findings and examines health equity within the context of human genomics and genomic medicine.

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

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.

Renewed calls for abortion-related research in the post-Roe era.

Nearly 50 years after Roe versus Wade, the United States Supreme Court's decision in Dobbs versus Jackson Women's Health Organization unraveled the constitutional right to abortion, allowing individual states to severely restrict or ban the procedure. In response, leading medical, public health, and community organizations have renewed calls for research to elucidate and address the burgeoning social and medical consequences of new abortion restrictions. Abortion research not only includes studies that establish the safety, quality, and efficacy of evidence-based abortion care protocols, but also encompasses studies on the availability of abortion care, the consequences of being denied an abortion, and the legal and social burdens surrounding abortion. The urgency of these calls for new evidence underscores the importance of ensuring that research in this area is conducted in an ethical and respectful manner, cognizant of the social, political, and structural conditions that shape reproductive health inequities and impact each stage of research-from protocol design to dissemination of findings. Research ethics relates to the moral principles undergirding the design and execution of research projects, and concerns itself with the technicalities of ethical questions related to the research process, such as informed consent, power relations, and confidentiality. Critical insights and reflections from reproductive justice, community engagement, and applied ethics frameworks have bolstered existing research ethics scholarship and discourse by underscoring the importance of meaningful engagement with community stakeholders-bringing attention to overlapping structures of oppression, including racism, sexism, and ways that these structures are perpetuated in the research process.

COVID Community-Engaged Testing in Alabama: Reaching Underserved Rural Populations Through Collaboration.

Rural communities are often underserved by public health testing initiatives in Alabama. As part of the National Institutes of Health's Rapid Acceleration of Diagnostics‒Underserved Populations initiative, the University of Alabama at Birmingham, along with community partners, sought to address this inequity in COVID-19 testing. We describe the participatory assessment, selection, and implementation phases of this project, which administered more than 23 000 COVID-19 tests throughout the state, including nearly 4000 tests among incarcerated populations. (Am J Public Health. 2022;112(10):1399-1403. https://doi.org/10.2105/AJPH.2022.306985).

Addressing Anti-Black Racism in Bioethics: Responding to the Call.

As a field concerned with ethical issues in health and health care, particularly how structures, policies, and practices unfairly advantage some and disadvantage others, bioethics has a moral obligation to address the long-standing challenges that racism has posed to the overall health and well-being of Black, Indigenous, and Latinx people and other people of color. Arguably, the premature death and disease disproportionately affecting Black Americans and the well-documented association of such death and illness with racism are issues that have not gained due attention in bioethics. This multiauthored report highlights the intergenerational work of mostly Black scholars and aims to create an agenda for bioethics that addresses anti-Black racism and the ways in which this form of racism threatens the actualization of justice in health and health care, not only for Black people and other minoritized groups but also for all people. This special report contains five major sections representing different approaches to scholarship, including theoretical, empirical, and narrative forms. The first section features two target articles focused on anti-Black racism and health care settings, with each article accompanied by two commentaries. The second section includes four essays thematically centered around anti-Black racism and health equity research and practice. Section three features four essays that explore anti-Black racism and bioethics. The next section consists of four essays framing a braver, bolder, and broader bioethics. We conclude with a powerful tribute to the late Marian Gray Secundy, a bioethics luminary, friend, colleague, role model, and mentor, and a tie that binds together many bioethics scholars who prioritize social justice in their scholarship and praxis.

Patient Health Literacy and Communication with Providers Among Women Living with HIV: A Mixed Methods Study.

In this mixed-methods study, we examine the relationship between provider communication and patient health literacy on HIV continuum of care outcomes among women living with HIV in the United States. We thematically coded qualitative data from focus groups and interviews (N = 92) and conducted mediation analyses with quantitative survey data (N = 1455) collected from Women's Interagency HIV Study participants. Four qualitative themes related to provider communication emerged: importance of respect and non-verbal cues; providers' expressions of condescension and judgement; patient health literacy; and unclear, insufficient provider communication resulting in diminished trust. Quantitative mediation analyses suggest that higher health literacy is associated with higher perceived patient-provider interaction quality, which in turn is associated with higher levels of trust in HIV providers, improved antiretroviral medication adherence, and reduced missed clinical visits. Findings indicate that enhancing provider communication and bolstering patient health literacy could have a positive impact on the HIV continuum of care.

RESUMEN: En este estudio de métodos mixtos, examinamos la relación entre la comunicación del proveedor y la alfabetización sanitaria del paciente sobre los resultados de la atención continua del VIH entre las mujeres que viven con el VIH en los Estados Unidos. Codificamos temáticamente datos cualitativos de grupos focales y entrevistas (N = 92) y realizamos análisis de mediación con datos de encuestas cuantitativas (N = 1455) recopilados de participantes del Estudio de VIH entre agencias de mujeres. Surgieron cuatro temas cualitativos relacionados con la comunicación con el proveedor: la importancia del respeto y las señales no verbales; las expresiones de condescendencia y juicio de los proveedores; alfabetización en salud del paciente; y una comunicación poco clara e insuficiente con el proveedor que da como resultado una disminución de la confianza. Los análisis de mediación cuantitativa sugieren que una mayor alfabetización en salud se asocia con una mayor calidad de interacción percibida entre el paciente y el proveedor, que a su vez se asocia con niveles más altos de confianza en los proveedores de VIH, una mejor adherencia a la medicación antirretroviral y una reducción de las visitas clínicas perdidas. Los resultados indican que mejorar la comunicación con los proveedores y reforzar la alfabetización sanitaria del paciente podría tener un impacto positivo en la atención continua del VIH.

The University of Alabama at Birmingham COVID-19 Collaborative Outcomes Research Enterprise: Developing an institutional learning health system in response to the global pandemic.

Introduction: As a local response to the COVID-19 global pandemic, the University of Alabama at Birmingham (UAB) established the UAB COVID-19 Collaborative Outcomes Research Enterprise (CORE), an institutional learning health system (LHS) to achieve an integrated health services outcomes and research response. Methods: We developed a network of expertise and capabilities to rapidly develop and deploy an institutional-level interdisciplinary LHS. Based upon a scoping review of the literature and the Knowledge to Action Framework, we adopted a LHS framework identifying contributors and components necessary to developing a system within and between the university academic and medical centers. We used social network analysis to examine the emergence of informal work patterns and diversified network capabilities based on the LHS framework. Results: This experience report details three principal characteristics of the UAB COVID-19 CORE LHS development: (a) identifying network contributors and components; (b) building the institutional network; and (c) diversifying network capabilities. Contributors and committees were identified from seven components of LHS: (a) collaborative and executive leadership committee, (b) research coordinating committee, (c) oversight and ethics committee, (d) thematic scientific working groups, (e) programmatic working groups, (f) informatics capabilities, and (g) patient advisory groups. Evolving from the topical interests of the initial CORE participants, scientific working groups emerged to support the learning system network. Programmatic working groups were charged with developing a comprehensive and mutually accessible COVID-19 database. Discussion: Our LHS framework allowed for effective integration of multiple academic and medical centers into a cohesive institutional-level learning system. Network analysis indicated diversity of institutional disciplines, professional rank, and topical focus pertaining to COVID-19, with each center leveraging existing institutional responsibilities to minimize gaps in network capabilities. Conclusion: Incorporating an adapted LHS framework designed for academic medical centers served as a foundational resource supporting further institutional-level efforts to develop agile and responsive learning networks.