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.

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).

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.

Addressing Ethical Challenges in US-Based HIV Phylogenetic Research.

In recent years, phylogenetic analysis of HIV sequence data has been used in research studies to investigate transmission patterns between individuals and groups, including analysis of data from HIV prevention clinical trials, in molecular epidemiology, and in public health surveillance programs. Phylogenetic analysis can provide valuable information to inform HIV prevention efforts, but it also has risks, including stigma and marginalization of groups, or potential identification of HIV transmission between individuals. In response to these concerns, an interdisciplinary working group was assembled to address ethical challenges in US-based HIV phylogenetic research. The working group developed recommendations regarding (1) study design; (2) data security, access, and sharing; (3) legal issues; (4) community engagement; and (5) communication and dissemination. The working group also identified areas for future research and scholarship to promote ethical conduct of HIV phylogenetic research.

Quality of care for Black and Latina women living with HIV in the U.S.: a qualitative study.

BACKGROUND: Ending the HIV epidemic requires that women living with HIV (WLWH) have access to structurally competent HIV-related and other health care. WLWH may not regularly engage in care due to inadequate quality; however, women's perspectives on the quality of care they receive are understudied. METHODS: We conducted 12 focus groups and three in-depth interviews with Black (90%) and Latina (11%) WLWH enrolled in the Women's Interagency HIV Study in Atlanta, GA, Birmingham, AL, Brooklyn, NY, Chapel Hill, NC, Chicago, IL, and Jackson, MS from November 2017 to May 2018 (n = 92). We used a semi-structured format to facilitate discussions about satisfaction and dissatisfaction with health care engagement experiences, and suggestions for improvement, which were audio-recorded, transcribed, and coded using thematic analysis. RESULTS: Themes emerged related to women's health care satisfaction or dissatisfaction at the provider, clinic, and systems levels and across Institute of Medicine-defined quality of care domains (effectiveness, efficiency, equity, patient-centeredness, safety and timeliness). Women's degree of care satisfaction was driven by: 1) knowledge-based care resulting in desired outcomes (effectiveness); 2) coordination, continuity and necessity of care (efficiency); 3) perceived disparities in care (equity); 4) care delivery characterized by compassion, nonjudgment, accommodation, and autonomous decision-making (patient-centeredness); 5) attention to avoiding side effects and over-medicalization (safety); and 6) limited wait time (timeliness). CONCLUSIONS: Quality of care represents a key changeable lever affecting engage in care among WLWH. The communities most proximally affected by HIV should be key stakeholders in HIV-related quality assurance. Findings highlight aspects of the health care experience valued by WLWH, and potential participatory, patient-driven avenues for improvement.

COVID-19's Impact on Women: A Stakeholder-Engagement Approach to Increase Public Awareness Through Virtual Town Halls.

Women face unprecedented challenges imposed by the COVID-19 pandemic. Emerging evidence suggests that women are unduly burdened by inequitable access to economic, health, and social resources during the pandemic. For many women, COVID-19 has presented new urgency to challenges and illuminates unique issues long encountered. Gendered roles such as family caregiving and frontline occupations increase women's exposure to COVID-19 infections and critical outcomes. To increase dialogue around COVID-19's impact on women, the University of Alabama at Birmingham School of Public Health convened a moderated virtual town hall on April 25, 2020, with 2 sexual and reproductive health experts. The town hall was the second in a series to increase public awareness of COVID-19's impact on vulnerable populations. This report highlights policy and practice implications that are particularly relevant for engaging key populations and delivering information to increase public awareness of COVID-19.

HIV Care Initiation: A Teachable Moment for Smoking Cessation?

Introduction: Tobacco use among persons living with HIV represents an important risk factor for poor treatment outcomes, morbidity, and mortality. Thus, efforts designed to inform the development of appropriate smoking cessation programs for this population remains a public health priority. To address this need, a study was conducted to longitudinally assess the relationship between intention to quit smoking and cessation over the 12-month period following initiation of HIV care. Methods: Patients initiating HIV care at a large inner city safety net clinic were enrolled (n = 378) in a 12-month prospective study. Audio computer-assisted self-interviews were conducted at baseline, and at 3, 6, 9, and 12 months post-enrollment, and HIV-related clinical data were collected from participants' electronic medical records. Variables of interest included intention to quit smoking, 7-day point prevalence smoking abstinence (biochemically verified), and stage of HIV. Data were collected in Houston, Texas from 2009 to 2015. Results: The sample was 75% male and 62% Black. Findings indicated that intention to quit smoking increased between baseline and 3 months, and subsequently trended downward from 3 to 12 months. Results from linear and generalized linear mixed models indicated that participants with advanced HIV disease (vs. not advanced) reported significantly (p < .05) higher intention to quit smoking at 3, 6, and 12 months post-study enrollment. A similar though nonsignificant pattern was observed in the smoking abstinence outcome. Conclusions: HIV treatment initiation appears to be associated with increases in intention to quit smoking thus serves as a potential teachable moment for smoking cessation intervention. Implications: This study documents significant increases in intention to quit smoking in the 3-month period following HIV care initiation. Moreover, quit intention trended downward following the 3-month follow-up until the 12-month follow-up. In addition, a marked effect for HIV disease stage was observed, whereby participants with advanced HIV disease (vs. those without) experienced a greater increase in intention to quit. HIV treatment initiation appears to be associated with increases in intention to quit smoking, thus serves as a crucial teachable moment for smoking cessation intervention for people living with HIV.

Rationales for expanding minority physician representation in the workforce: a scoping review.

OBJECTIVES: The purpose of this study was to conduct a scoping review of the literature and to categorically map a 15-year trajectory of US undergraduate medical education rationales for and approaches to expanding under-represented minority (URM) physician representation in the medical workforce. Further aims were to comparatively examine related justifications and to consider international implications. METHODS: From 1 June to 31 July 2015, the authors searched the Cochrane Library, ERIC, PsycINFO, PubMed, Scopus, Web of Science and Google Scholar for articles published between 2000 and 2015 reporting rationales for and approaches to increasing the numbers of members of URMs in undergraduate medical school. RESULTS: A total of 137 articles were included in the scoping review. Of these, 114 (83%) mentioned workforce diversity and 73 (53%) mentioned concordance. The patient-physician relationship (n = 52, 38%) and service commitment (n = 52, 38%) were the most commonly cited rationales. The most frequently mentioned approaches to increasing minority representation were pipeline programmes (n = 59, 43%), changes in affirmative action laws (n = 32, 23%) and changes in admission policies (n = 29, 21%). CONCLUSIONS: This scoping review of the 2000-2015 literature on strategies for and approaches to expanding URM representation in medicine reveals a repetitive, amplifying message of URM physician service commitment to vulnerable populations in medically underserved communities. Such message repetition reinforces policies and practices that might limit the full scope of URM practice, research and leadership opportunities in medicine. Cross-nationally, service commitment and patient-physician concordance benefits admittedly respond to recognised societal need, yet there is an associated risk for instrumentally singling out members of URMs to fulfil that need. The proceedings of a 2001 US Institute of Medicine symposium warned against creating a deterministic expectation that URM physicians provide care to minority populations. Our findings suggest that the expanding emphasis on URM service commitment and patient-physician concordance benefits warrants ongoing scrutiny and, more broadly, represent a cautionary tale of unintended consequences for medical educators globally.

Cervical cancer screening adherence among HIV-positive female smokers from a comprehensive HIV clinic.

HIV-positive women are at elevated risk for developing cervical cancer. While emerging research suggests that gynecologic health care is underutilized by HIV-positive women, factors associated with adherence to Pap testing, especially among HIV-positive female smokers are not well known. We utilized baseline data from a smoking cessation trial and electronic medical records to assess Pap smear screening prevalence and the associated characteristics among the HIV-positive female participants (n = 138). 46 % of the women had at least 1 Pap test in the year following study enrollment. Multiple logistic regression analysis indicated that younger age, African American race, hazardous drinking, increased number of cigarettes smoked per day, and smoking risk perception were associated with non-adherence to Pap smear screening. Cervical cancer screening was severely underutilized by women in this study. Findings underscore the importance of identifying predictors of non-adherence and addressing multiple risk factors and behavioral patterns among HIV-positive women who smoke.

Perceptions of barriers and facilitators to cervical cancer screening among low-income, HIV-infected women from an integrated HIV clinic.

Significantly elevated rates of cervical cancer and low rates of Papanicolaou (Pap) smear screening have been documented among HIV-infected women. However, little is known about women's perceptions of cervical cancer screening utilization. Hence, this study describes barriers and facilitators related to cervical cancer screening in a sample of HIV-infected women seeking care at an integrated HIV clinic in Houston, Texas. Using an inductive qualitative methodological approach, data were obtained from five focus group discussions with a total of 33, HIV-infected women. The majority of the study sample consisted of women who self-identified as Black (69.7%), and reported heterosexual contact as the mode of HIV acquisition (75.8%). Barriers to cervical cancer screening were described as pain and discomfort associated with receiving Pap smears and subsequent procedures; lack of awareness of cervical cancer as a preventable disease; limited transportation access; and systemic issues as it relates to scheduling gynecological appointments. Facilitators were described as awareness of HIV-infected women's increased risk of cervical cancer and strong provider-patient relationships. To address disparities in cervical cancer screening among low-income HIV-infected women, programs should capitalize on the identified facilitators and alleviate modifiable barriers using multilevel strategies.

The influence of HIV disease events/stages on smoking attitudes and behaviors: project STATE (Study of Tobacco Attitudes and Teachable Events).

BACKGROUND: Given the increase in life expectancy among HIV-positive individuals attributable to antiretroviral therapies, cigarette smoking now represents one of the most salient health risks confronting the HIV-positive population. Despite this risk, very few efforts to date have been made to target persons living with HIV for smoking cessation treatment, and no efforts have been made to explore the role of cognitions and HIV disease events/stages on smoking outcomes. The purpose of the study, Project STATE (Study of Tobacco Attitudes and Teachable Events), is to prospectively examine the relationship between HIV events/stages, perceived impact of HIV disease, attitudes about cigarette smoking, and smoking behaviors. METHODS/DESIGN: This study employs a prospective design. Patients are recruited at the time of their first physician visit at a large inner city HIV-clinic--Thomas Street Health Center (TSHC). Consenting participants then complete a baseline assessment. All participants are offered standard care smoking cessation treatment. Follow-up assessments are completed on four subsequent occasions: 3, 6, 9, and 12 months post-baseline. These follow-up assessments are scheduled to coincide with routine clinic appointments with their TSHC physicians. In addition, each participant is given a prepaid cell phone at the time of enrollment and asked to complete brief phone assessments weekly for the first three months of the study period. DISCUSSION: By evaluating events/stages of HIV disease as potential teaching moments for smoking cessation, findings from this study could be used to develop treatments tailored to an individual's stage of HIV disease. This study design will enable us to carefully track changes in smoking behavior over time, and to link these changes to both the course of HIV disease and/or to the participant's' perceived impact of HIV. By identifying optimal time points for intervention, the findings from this study will have the potential to maximize the efficiency and efficacy of cessation treatments delivered in resource-limited settings. In addition, the findings will be instrumental in identifying specific constructs that should be targeted for intervention and will provide a strong foundation for the development of future cessation interventions targeting smokers living with HIV/AIDS.

Does knowledge influence pap test screening among young African-American women?

Pap test screening among African-American women has substantially increased. However, African-American women continue to bear the burden of cervical cancer as compared to White women. The objective of this study was to assess the influence of Pap test knowledge on cervical screening history among young African-American women. Between January and April 2009, 320 women from historically black colleges and universities located in the southeastern United States who met study inclusion criteria completed an anonymous self-report questionnaire to assess their awareness, knowledge, and behaviors related to human papillomavirus and cervical cancer prevention and control. Seventy-six percent of women reported ever having a Pap test, 54 % reported having a Pap test less than 1 year ago, and 25 % reported ever having an abnormal Pap test result. The overall mean score on the six-point Pap test knowledge scale was 4.46 ± 1.02. Women who reported having an abnormal Pap test (4.96 ± 0.82) had significantly higher Pap test knowledge compared to those never having an abnormal result (4.49 ± 1.04), p < 0.01. No other differences were found. Efforts to improve Pap test knowledge among all women, including those with no prior abnormal Pap test history, are critical to cervical cancer prevention and control over the life course. Such efforts should include creating information that is relevant to the population and enables informed decision making about cervical health.

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.

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.

Long-term outcomes of a cell phone-delivered intervention for smokers living with HIV/AIDS.

BACKGROUND: People living with human immunodeficiency virus (HIV)/AIDS (PLWHA) have a substantially higher prevalence of cigarette smoking compared to the general population. In addition, PLWHA are particularly susceptible to the adverse health effects of smoking. Our primary objective was to design and test the efficacy over 12 months of a smoking cessation intervention targeting PLWHA. METHODS: Participants were enrolled from an urban HIV clinic with a multiethnic and economically disadvantaged patient population. Participants received smoking cessation treatment either through usual care (UC) or counseling delivered by a cell phone intervention (CPI). The 7-day point prevalence abstinence was evaluated at 3, 6, and 12 months using logistic regression and generalized linear mixed models. RESULTS: We randomized 474 HIV-positive smokers to either the UC or CPI group. When evaluating the overall treatment effect (7-day abstinence outcomes from 3-, 6-, and 12-month follow-ups), participants in the CPI group were 2.41 times (P = .049) more likely to demonstrate abstinence compared to the UC group. The treatment effect was strongest at the 3-month follow-up (odds ratio = 4.3, P < .001), but diminished at 6 and 12 months (P > .05). CONCLUSIONS: Cell phone-delivered smoking cessation treatment has a positive impact on abstinence rates compared to a usual care approach. Future research should focus on strategies for sustaining the treatment effect in the long term.