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.

Patients' Experiences With HIV-positive to HIV-positive Organ Transplantation.

BACKGROUND: HIV+ donor (HIV D+) to HIV+ recipient (HIV R+) transplantation involves ethical considerations related to safety, consent, stigma, and privacy, which could be better understood through studying patients' actual experiences. METHODS: We interviewed kidney and liver transplant recipients enrolled in clinical trials evaluating HIV D+/R+ transplantation at 4 centers regarding their decision-making process, the informed consent process, and posttransplant experiences. Participants were interviewed at-transplant (≤3 wk after transplant), posttransplant (≥3 mo after transplant), or both time points. Interviews were analyzed thematically using constant comparison of inductive and deductive coding. RESULTS: We conducted 35 interviews with 22 recipients (15 at-transplant; 20 posttransplant; 13 both time points; 85% participation). Participants accepted HIV D+ organs because of perceived benefits and situational factors that increased their confidence in the trials and outweighed perceived clinical and social risks. Participants reported positive experiences with the consent process and the trial. Some described HIV-related stigma and emphasized the need for privacy; others believed HIV D+/R+ transplantation could help combat such stigma. There were some indications of possible therapeutic misestimation (overestimation of benefits or underestimation of risks of a study). Some participants believed that HIV+ transplant candidates were unable to receive HIV-noninfected donor organs. CONCLUSIONS: Despite overall positive experiences, some ethical concerns remain that should be mitigated going forward. For instance, based on our findings, targeted education for HIV+ transplant candidates regarding available treatment options and for transplant teams regarding privacy and stigma concerns would be beneficial.

The Long Arm of Oppression: How Structural Stigma Against Marginalized Communities Perpetuates Within-Group Health Disparities.

Understanding and addressing health inequities calls for enhanced theoretical and empirical attention to multiple forms of stigma and its influence on health behaviors and health outcomes within marginalized communities. While recent scholarship highlights the role of structural stigma on between-group health disparities, the extant literature has yet to elucidate the mechanisms through which structural stigma gives rise to within-group health disparities. In this article, we review and use relevant literature to inform the development of a conceptual model outlining how structural stigma contributes to within-group health disparities by creating division and tension within communities marginalized due to their social statuses and identities. We specifically focus on disparities among (1) communities of color due to White supremacy, (2) gender and sexual minority communities due to patriarchy and heterosexism, and (3) the disability community due to ableism. We argue that the nature and extent of the stigma members of stigmatized communities face are intricately tied to how visible the stigmatized characteristic is to others. By visibility, we refer to characteristics that are more easily perceived by others, and reveal a person's social identity (e.g., race/ethnicity, nativity, relationship status, gender expression, and disability status). This paper advances the literature by discussing the implications of the model for future research, practice, and policy, including the importance of acknowledging the ways in which structural stigma intentionally disrupts the collective identity and solidarity of communities and consequently threatens health equity.

Antiracist Praxis in Public Health: A Call for Ethical Reflections.

The Covid-19 pandemic has revealed myriad social, economic, and health inequities that disproportionately burden populations that have been made medically or socially vulnerable. Inspired by state and local governments that declared racism a public health crisis or emergency, the Anti-Racism in Public Health Act of 2020 reflects a shifting paradigm in which racism is considered a social determinant of health. Indeed, health inequities fundamentally rooted in structural racism have been exacerbated by the Covid-19 pandemic, which calls for the integration of antiracist praxis to promote ethical public health research processes. This commentary describes ways in which antiracist praxis-which emphasizes empowerment of traditionally marginalized populations-offers strategies to explicitly address power imbalance, stigmatization, and other consequences of structural racism in public health research.

Institutional Distrust among African Americans and Building Trustworthiness in the COVID-19 Response: Implications for Ethical Public Health Practice.

African Americans are disproportionately affected by COVID-19-related disease and mortality due to long-standing social, political, economic, and environmental injustice; and COVID-19 inequities are exacerbated by institutional distrust. In the absence of trust, public health authorities have not adequately fulfilled their professional and ethical obligations to protect African American communities from the negative effects of COVID-19. As institutional distrust is shaped by individual and collective experiences of untrustworthiness, we propose a paradigm shift from increasing trust among African Americans to increasing trustworthiness among medical and public health institutions/systems throughout the United States. This narrative review extends the literature describing how social determinants contribute to COVID-19 inequities by demonstrating how institutional distrust develops over time and is reinforced through systems of injustice. Additionally, we illustrate consequences of institutional distrust for COVID-19 inequities and provide recommendations for building trustworthiness through ethical public health practice.