Associations between subjective social status and predictors of interest in genetic testing among women diagnosed with breast cancer at a young age.

PURPOSE: Genetic testing for gene mutations which elevate risk for breast cancer is particularly important for women diagnosed at a young age. Differences remain in access and utilization to testing across social groups, and research on the predictors of interest in genetic testing for women diagnosed at a young age is limited. METHODS: We examined the relationships between subjective social status (SSS) and variables previously identified as possible predictors of genetic testing, including genome sequencing knowledge, genetic worry, cancer worry, health consciousness, decision-making preferences, genetic self-efficacy, genetic-related beliefs, and subjective numeracy, among a cohort of women who were diagnosed with breast cancer at a young age. RESULTS: In this sample (n = 1,076), those who had higher SSS had significantly higher knowledge about the limitations of genome sequencing (Odds Ratio (OR) = 1.11; 95% CI = 1.01-1.21) and significantly higher informational norms (OR = 1.93; 95% CI = 1.19-3.14) than those with lower SSS. Similarly, education (OR = 2.75; 95% CI = 1.79-4.22), health status (OR = 2.18; 95% CI = 1.44-3.31) were significant predictors among higher SSS women compared to lower SSS women in our multivariate analysis. Lower SSS women with low self-reported income (OR = 0.13; 95% CI = 0.08-0.20) had lower odds of genetic testing interest. Our results are consistent with some prior research utilizing proxy indicators for socioeconomic status, but our research adds the importance of using a multidimensional indicator such as SSS to examine cancer and genetic testing predictor outcomes. CONCLUSION: To develop interventions to improve genetic knowledge, researchers should consider the social status and contexts of women diagnosed with breast cancer at a young age (or before 40 years old) to ensure equity in the distribution of genetic testing benefits.

Racial and Ethnic Composition of Departments of Health Policy, Management, Education, and Behavioral Sciences.

The diversity of racial/ethnic representation in the health services and policy research (HSPR) workforce plays a crucial role in addressing the health needs of underserved populations. We assessed changes (between 2012 and 2022) in the racial/ethnic composition of students and faculty from departments of Health Policy & Management (HPM) and Health Education & Behavioral Sciences (HEBS) among the Association of Schools and Programs of Public Health member institutions. We analyzed annual data from over 40 institutions that reported student and faculty data in 2012 and 2022 within each department. Racial/ethnic populations included American Indian/Alaska Native (AI/AN), Asian, Hispanic, Native Hawaiian/Pacific Islander (NH/PI), Black, White, Unknown, and Multiracial. We conducted analyses by department and examined racial/ethnic composition by student status, degree level, faculty rank, and tenure status. We found statistically significant increases in Black assistant professors (HPM and HEBS) and tenured faculty (HPM), Hispanic graduates and tenure-track faculty (HPM), Asian professors (HPM: full and tenured, HEBS: associate and tenured), and Multiracial students and graduates (HPM and HEBS). Statistically significant decreases were observed in White professors (HPM: assistant and full, HEBS: all ranks) and tenure-track faculty (HPM and HEBS), AI/AN associate professors and tenured faculty (HEBS), Hispanic associate professors (HPM), Asian assistant professors (HEBS), and NH/PI students (HPM and HEBS). Our findings highlight the importance of increasing racial/ethnic representation. Strategies to achieve this include facilitating workshops to raise awareness about the structural barriers encountered by Hispanic faculty, providing research support, evaluating promotion processes, establishing more pathway programs, and fostering interdisciplinary academic environments studying AI/AN or NH/PI populations.

Application of a Heuristic Framework for Multilevel Interventions to Eliminate the Impact of Unjust Social Processes and Other Harmful Social Determinants of Health.

There is consensus about the importance of developing a strong cadre of effective multilevel interventions to eliminate the impacts of unjust social processes, such as structural racism and other harmful social determinants of health (SDOH), on health inequities in the USA. However, the available cadre of rigorously evaluated evidence-based interventions for SDOH mitigation remains underdeveloped relative to the magnitude of historic and current health inequities. The proposed manuscript addresses this gap in two ways: first, by introducing a heuristic framework to inform decisions in multilevel intervention development, study design, and selection of analytic methods and, second, by providing a roadmap for future applications of the framework in multilevel intervention research through an exemplar application using the ongoing NIH-funded evaluation study of the Nurse-Community-Family Partnership (NCFP) intervention. NCFP leverages individual, family, institutional, and system factors to shape COVID-19 mitigation outcomes at the individual and household levels. NCFP takes an approach informed by the heuristic framework to addressing and mitigating unjust social processes and other harmful SDOH. We discuss the application of a two-arm parallel explanatory group randomized trial to evaluate the efficacy of NCFP in improving the primary (COVID-19 testing uptake) and secondary (adoption of COVID-19 control measures, COVID-19 vaccine uptake, mutual aid capacity, etc.) outcomes at the individual and household levels. The analysis approach relies on random-intercept models, and we calculate the variance partitioning coefficient to estimate the extent to which household- and individual-level variables contribute to the outcome, allowing examination of NCFP effects at multiple levels.

Love after lockup: examining the role of marriage, social status, and financial stress among formerly incarcerated individuals.

BACKGROUND: Upon reintegration into society, formerly incarcerated individuals (FIIs) experience chronic financial stress due to prolonged unemployment, strained social relationships, and financial obligations. This study examined whether marriage and perceived social status can mitigate financial stress, which is deleterious to the well-being of FIIs. We also assessed whether sociodemographic factors influenced financial stress across marital status. We used cross-sectional data from 588 FIIs, collected in the 2023 Survey of Racism and Public Health. The financial stress outcome (Cronbach's [Formula: see text] = 0.86) comprised of five constructs: psychological distress, financial anxiety, job insecurity, life satisfaction, and financial well-being. Independent variables included marital and social status, age, race/ethnicity, gender identity, educational attainment, employment status, and number of dependents. Multivariable models tested whether financial stress levels differed by marital and perceived social status (individual and interaction effects). Stratified multivariable models assessed whether social status and sociodemographic associations varied by marital status. RESULTS: We found that being married/living with a partner (M/LWP, b = -5.2) or having higher social status (b = -2.4) were protective against financial stress. Additionally, the social status effect was more protective among divorced, separated, or widowed participants (b = -2.5) compared to never married (NM, b = -2.2) and M/LWP (b = -1.7) participants. Lower financial stress correlated with Black race and older age, with the age effect being more pronounced among M/LWP participants (b = -9.7) compared to NM participants (b = -7.3). Higher financial stress was associated with woman gender identity (overall sample b = 2.9, NM sample b = 5.1), higher education (M/LWP sample b = 4.4), and having two or more dependents (overall sample b = 2.3, M/LWP sample b = 3.4). CONCLUSIONS: We provide novel insights into the interrelationship between marriage, perceived social status, and financial stress among FIIs. Our findings indicate the need for policies and programs which may target the family unit, and not only the individual, to help alleviate the financial burden of FIIs. Finally, programs that offer legal aid to assist in expungement or sealing of criminal records or those offering opportunities for community volunteer work in exchange for vouchers specific to legal debt among FIIs could serve to reduce financial stress and improve social standing.

Evaluating ApoL1 Genetic Testing Policy Options for Transplant Centers: A Delphi Consensus Panel Project with Stakeholders.

BACKGROUND: Apolipoprotein L1 (ApoL1) variants G1 and G2 are associated with a higher risk of kidney disease. ApoL1 risk variants are predominantly seen in individuals with sub-Saharan African ancestry. In most transplant centers, potential organ donors are being selectively genetically tested for ApoL1 risk variants. Transplant programs have highly variable ApoL1 testing practices and need guidance on essential ApoL1 clinical policy questions. METHODS: We conducted a Delphi consensus panel focused on ApoL1 clinical policy questions, including who gets tested, who decides whether testing occurs, how test results are shared, who receives test results, and how test results are used. A total of 27 panelists across seven stakeholder groups participated: living kidney donors ( n =4), deceased donor family members ( n =3), recipients of a deceased donor kidney ( n =4), recipients of a living donor kidney ( n =4), nephrologists ( n =4), transplant surgeons ( n =4), and genetic counselors ( n =4). Nineteen panelists (70%) identified as Black. The Delphi panel process involved two rounds of educational webinars and three rounds of surveys administered to panelists, who were asked to indicate whether they support, could live with, or oppose each policy option. RESULTS: The panel reached consensus on one or more acceptable policy options for each clinical policy question; panelists supported 18 policy options and opposed 15. Key elements of consensus include the following: ask potential donors about African ancestry rather than race; make testing decisions only after discussion with donors; encourage disclosure of test results to blood relatives and organ recipients but do not require it; use test results to inform decision making, but never for unilateral decisions by transplant programs. CONCLUSIONS: The panel generally supported policy options involving discussion and shared decision making among patients, donors, and family stakeholders. There was general opposition to unilateral decision making and prohibiting donation altogether.

Enhanced family history-based algorithms increase the identification of individuals meeting criteria for genetic testing of hereditary cancer syndromes but would not reduce disparities on their own.

OBJECTIVE: This study aimed to 1) investigate algorithm enhancements for identifying patients eligible for genetic testing of hereditary cancer syndromes using family history data from electronic health records (EHRs); and 2) assess their impact on relative differences across sex, race, ethnicity, and language preference. MATERIALS AND METHODS: The study used EHR data from a tertiary academic medical center. A baseline rule-base algorithm, relying on structured family history data (structured data; SD), was enhanced using a natural language processing (NLP) component and a relaxed criteria algorithm (partial match [PM]). The identification rates and differences were analyzed considering sex, race, ethnicity, and language preference. RESULTS: Among 120,007 patients aged 25-60, detection rate differences were found across all groups using the SD (all P < 0.001). Both enhancements increased identification rates; NLP led to a 1.9 % increase and the relaxed criteria algorithm (PM) led to an 18.5 % increase (both P < 0.001). Combining SD with NLP and PM yielded a 20.4 % increase (P < 0.001). Similar increases were observed within subgroups. Relative differences persisted across most categories for the enhanced algorithms, with disproportionately higher identification of patients who are White, Female, non-Hispanic, and whose preferred language is English. CONCLUSION: Algorithm enhancements increased identification rates for patients eligible for genetic testing of hereditary cancer syndromes, regardless of sex, race, ethnicity, and language preference. However, differences in identification rates persisted, emphasizing the need for additional strategies to reduce disparities such as addressing underlying biases in EHR family health information and selectively applying algorithm enhancements for disadvantaged populations. Systematic assessment of differences in algorithm performance across population subgroups should be incorporated into algorithm development processes.

Community Walks: a cluster randomized controlled trial of a multilevel physical activity intervention for low income public housing residents.

BACKGROUND: Physical activity behavioral interventions to change individual-level drivers of activity, like motivation, attitudes, and self-efficacy, are often not sustained beyond the intervention period. Interventions at both environmental and individual levels might facilitate durable change. This community-based study seeks to test a multilevel, multicomponent intervention to increase moderate intensity physical activity among people with low incomes living in U.S. public housing developments, over a 2 year period. METHODS: The study design is a prospective, cluster randomized controlled trial, with housing developments (n=12) as the units of randomization. In a four-group, factorial trial, we will compare an environmental intervention (E) alone (3 developments), an individual intervention (I) alone (3 developments), an environmental plus individual (E+I) intervention (3 developments), against an assessment only control group (3 developments). The environmental only intervention consists of community health workers leading walking groups and indoor activities, a walking advocacy program for residents, and provision of walking maps/signage. The individual only intervention consists of a 12-week automated telephone program to increase physical activity motivation and self-efficacy. All residents are invited to participate in the intervention activities being delivered at their development. The primary outcome is change in moderate intensity physical activity measured via an accelerometer-based device among an evaluation cohort (n=50 individuals at each of the 12 developments) from baseline to 24-month follow up. Mediation (e.g., neighborhood walkability, motivation) and moderation (e.g., neighborhood stress) of our interventions will be assessed. Lastly, we will interview key informants to assess factors from the Consolidated Framework for Implementation Research domains to inform future implementation. DISCUSSION: We hypothesize participants living in developments in any of the three intervention groups (E only, I only, and E+I combined) will increase minutes of moderate intensity physical activity more than participants in control group developments. We expect delivery of an intervention package targeting environmental and social factors to become active, combined with the individual level intervention, will improve overall physical activity levels to recommended guidelines at the development level. If effective, this trial has the potential for implementation through other federal and state housing authorities. TRIAL REGISTRATION: Clinical Trails.gov PRS Protocol Registration and Results System, NCT05147298 . Registered 28 November 2021.

The measurement of racism in health inequities research.

There is limited literature on the measures and metrics used to examine racism in the health inequities literature. Health inequities research is continuously evolving, with the number of publications increasing over time. However, there is limited knowledge on the best measures and methods to examine the impact of different levels of racism (institutionalized, personally mediated, and internalized) on health inequities. Advanced statistical methods have the potential to be used in new ways to examine the relationship between racism and health inequities. In this review, we conduct a descriptive examination of the measurement of racism in the health inequities epidemiologic literature. We examine the study design, methods used for analysis, types of measures used (e.g., composite, absolute, relative), number of measures used, phase of research (detect, understand, solutions), viewpoint (oppressor, oppressed), and components of structural racism measures (historical context, geographical context, multifaceted nature). We discuss methods (e.g., Peters-Belson, latent class analysis, difference in differences) that have demonstrated potential for future work. The articles reviewed were limited to the detect (25%) and understand (75%) phases, with no studies in the solutions phase. Although the majority (56%) of studies had cross-sectional designs, many authors pointed to the need for longitudinal and multilevel data for further exploration. We examined study design features as mutually exclusive elements. However, racism is a multifaceted system and the measurement of racism in many studies does not fit into a single category. As the literature grows, the significance of methodological and measurement triangulation to assess racism should be investigated.

Investigation of interest in and timing preference for cancer predisposition testing and expanded carrier screening among women of reproductive age.

Objective: To examine cognitive, relational, and social predictors of interest in and timing preference for cancer predisposition testing (CPT) and expanded carrier screening (ECS) offered in routine gynecologic care for women of reproductive age. Methods: Women between 20 and 35 years old who were currently pregnant or had a prior pregnancy (N = 351) completed an online survey. Bivariate and multivariable analyses were used to identify significant predictors of women's interest in and timing preference for CPT and ECS. Results: Most respondents reported high interest in CPT and ECS and preferred to have them when planning for a pregnancy. Perceived importance of genetic information and negative attitude towards uncertainty predicted interest in CPT and ECS in multivariable models. Genetic knowledge predicted preference for CPT or ECS when planning for a pregnancy. Conclusion: Educational and decision support tools should be developed to enhance women's knowledge and awareness of CPT and ECS and to provide them with strategies to manage uncertainty. Innovation: We examined women's timing preference for CPT and ECS and the impact of partner support and trust with gynecologist. A context-specific attitudes toward uncertainty scale was used to investigate women's particular perceptions of uncertainty in genetic testing.

Barriers to Using Legally Authorized Representatives in Clinical Research with Older Adults.

Background: Older adults are at increased risk of cognitive impairments including Alzheimer's disease dementia. Legally authorized representatives (LARs) can provide informed consent when a participant is no longer able to, but little is known about barriers to incorporating them in research. Objective: Explore reasons for not asking and documenting participant decisions to appoint LARs among researchers conducting clinical intervention trials studying older adults or individuals with cognitive impairments. Methods: Mixed method design consisting of a survey (N = 1,284) and qualitative interviews (N = 40) regarding barriers to incorporating LARs. Participants were principal investigators and clinical research coordinators. Results: 37% (N = 469) had not asked and documented participant decisions about appointing LARs in the prior year. They had significantly lower confidence in resources available to incorporate LARs and lower positive attitudes compared to their counterparts who had done so. The majority (83%) had no trials studying individuals with cognitive impairments and reported LARs were not applicable. A minority (17%) had at least one trial studying individuals with cognitive impairments and reported being unaware of LARs. Qualitative findings indicate discomfort broaching a sensitive topic especially with individuals who are not yet impaired. Conclusion: Resources and education to increase awareness and knowledge of LARs are needed. Researchers studying older adults should, at minimum, have the knowledge and resources to incorporate LARs when necessary. Stigma and discomfort discussing LARs will need to be overcome, as early proactive discussions before a participant loses decisional capacity could enhance participant autonomy and facilitate recruitment and retention of older adults to research.

Promoting Authentic Academic-Community Engagement to Advance Health Equity.

Meaningful community engagement is critical to achieving the lofty goal of health equity. Nonetheless, implementing the principles of community engagement is not easy. Attempting to implement best practices for collaborating on transdisciplinary teams and working with community partners can be challenging, particularly in locales that have a long history of strained university-community relationships. The purpose of this paper is to provide additional context and consideration for researchers, community partners, and institutions interested in conducting community-engaged research. Here, we provide guidance and highlight exemplary programs that offer effective approaches to enhance the strength of community partnerships. These partnerships not only hold promise but are also essential in the development of the local, multi-factor solutions required to address racial/ethnic inequities in health.

A randomized implementation trial to increase adoption of evidence-informed consent practices.

Introduction: Several evidence-informed consent practices (ECPs) have been shown to improve informed consent in clinical trials but are not routinely used. These include optimizing consent formatting, using plain language, using validated instruments to assess understanding, and involving legally authorized representatives when appropriate. We hypothesized that participants receiving an implementation science toolkit and a social media push would have increased adoption of ECPs and other outcomes. Methods: We conducted a 1-year trial with clinical research professionals in the USA (n = 1284) who have trials open to older adults or focus on Alzheimer's disease. We randomized participants to receive information on ECPs via receiving a toolkit with a social media push (intervention) or receiving an online learning module (active control). Participants completed a baseline survey and a follow-up survey after 1 year. A subset of participants was interviewed (n = 43). Results: Participants who engaged more with the toolkit were more likely to have tried to implement an ECP during the trial than participants less engaged with the toolkit or the active control group. However, there were no significant differences in the adoption of ECPs, intention to adopt, or positive attitudes. Participants reported the toolkit and social media push were satisfactory, and participating increased their awareness of ECPs. However, they reported lacking the time needed to engage with the toolkit more fully. Conclusions: Using an implementation science approach to increase the use of ECPs was only modestly successful. Data suggest that having institutional review boards recommend or require ECPs may be an effective way to increase their use.

Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.

Geographical ancestry has been associated with an increased risk of various genetic conditions. Race and ethnicity often have been used as proxies for geographical ancestry. Despite numerous problems associated with the crude reliance on race and ethnicity as proxies for geographical ancestry, some genetic testing in the clinical, research, and employment settings has been and continues to be race- or ethnicity-based. Race-based or race-targeted genetic testing refers to genetic testing offered only or primarily to people of particular racial or ethnic groups because of presumed differences among groups. One current example is APOL1 testing of Black kidney donors. Race-based genetic testing raises numerous ethical and policy questions. Given the ongoing reliance on the Black race in genetic testing, it is important to understand the views of people who identify as Black or are identified as Black (including African American, Afro-Caribbean, and Hispanic Black) regarding race-based genetic testing that targets Black people because of their race. We conducted a systematic review of studies and reports of stakeholder-engaged projects that examined how people who identify as or are identified as Black perceive genetic testing that specifically presumes genetic differences exist among racial groups or uses race as a surrogate for ancestral genetic variation and targets Black people. Our review identified 14 studies that explicitly studied this question and another 13 that implicitly or tacitly studied this matter. We found four main factors that contribute to a positive attitude toward race-targeted genetic testing (facilitators) and eight main factors that are associated with concerns regarding race-targeted genetic testing (barriers). This review fills an important gap. These findings should inform future genetic research and the policies and practices developed in clinical, research, public health, or other settings regarding genetic testing.

Racial and Ethnic Composition of Students, Graduates, and Faculty in Environmental Health Sciences, 2011 to 2021.

The lack of diversity among the environmental health sciences (EHS) workforce has been an ongoing concern. However, limited research exists on the racial and ethnic composition of EHS students and faculty over time. We analyzed 2011 and 2021 data on EHS students, graduates, and faculty to compare changes in the racial and ethnic composition among Association of Schools and Programs of Public Health-member institutions. Among the institutions that reported data in both years, we observed significant proportion increases among Hispanic enrolled students (overall and master's: both P = .01), Multiracial enrolled students and graduates (overall: both P < .05, master's level: both P < .05), and Asian tenured professors (P = .01). Significant decreases were observed among Unknown enrolled students (overall: P = .01, master's level: P < .001), Unknown master's level graduates (P = .01), AI/AN enrolled students (overall and master's: both P < .05), and White full professors (P < .001) and tenured faculty (P < .001). Despite these findings, no substantial change existed among the other racial and ethnic groups. More efforts are needed to recruit, train, and promote racial and ethnic minorities who can leverage their lived experiences to provide novel solutions to environmental challenges.

Predictors of Women's Intentions to Communicate Updated Genetic Test Results to Immediate and Extended Family Members.

INTRODUCTION: Many individuals who previously received negative genetic test results are eligible for updated testing. This study examined intention to communicate updated genetic test results to relatives in participants who previously received negative genetic test results. METHODS: Women with a personal or family history of breast or ovarian cancer who tested negative for BRCA1/2 before 2013 were enrolled between April 2018 and October 2019. Proportions were calculated to assess intention to communicate updated genetic test results to living immediate family, extended family, and all family. Potential predictors of intentions from the theory of planned behavior (attitudes, subjective norms, perceived behavioral control) were assessed. The three outcomes were analyzed using generalized linear models with a quasi-binomial probability distribution. RESULTS: 110 women completed the baseline assessment prior to updated testing. Participants intended to communicate genetic test results to 90% of immediate family, 51% of extended family, and 66% of all living relatives. Participants with higher subjective norms (aOR = 1.93, 95% CI: 1.08-3.57) had higher intentions to communicate genetic test results to extended family, while participants with more positive attitudes (aOR = 1.27, 95% CI: 1.01-1.60) had higher intentions to communicate to all family. Placing higher importance on genetic information was associated with higher intentions to communicate to immediate family (aOR = 1.40, 95% CI: 1.06-1.83). Lower subjective numeracy was associated with higher intentions to communicate to extended family (aOR = 0.50, 95% CI: 0.32-0.76). CONCLUSION: Attitudes and subjective norms were predictors of intention to communicate updated genetic information to at-risk biological relatives, and predictors may vary by degree of relationship.

Racial and Ethnic Diversity Among Students, Graduates, and Faculty in Biostatistics and Epidemiology, 2010-2020.

OBJECTIVE: This study is a follow-up to a study in 2020 that reviewed changes in the racial and ethnic composition of public health students, graduates, and faculty among Association of Schools and Programs of Public Health (ASPPH)-member institutions. In the current study, we evaluated how the racial and ethnic composition among biostatistics and epidemiology students, graduates, and faculty changed from 2010 to 2020. METHODS: We analyzed data on race and ethnicity of enrolled graduate students, graduates (master's and doctoral), and faculty at ASPPH-member institutions by using institutionally reported data from the ASPPH Data Center. We tabulated frequencies, percentages, and percentage-point changes by race and ethnicity. We measured differences between groups by using a test for difference in 2 proportions. RESULTS: The number of enrolled students, graduates, and faculty in all departments increased during the study period, while the number of tenure-track faculty in biostatistics decreased. The percentage of enrolled Hispanic/Latino biostatistics graduate students increased from 5.6% in 2010 to 10.2% in 2020 (P = .007), and the percentage of epidemiology graduates increased from 8.8% to 13.8% (P = .008). We found no differences among other underrepresented racial and ethnic groups. Most biostatistics and epidemiology professors at all ranks were non-Hispanic White, despite substantial decreases. The percentage of underrepresented racial and ethnic minority biostatistics and epidemiology professors was constant across all ranks. CONCLUSION: Although more Hispanic/Latino students are enrolled in and graduating from biostatistics and epidemiology departments at ASPPH-member institutions, we found no change among faculty. More work is needed to recruit and retain other (American Indian/Alaska Native, Black or African American, Native Hawaiian/Other Pacific Islander) underrepresented students and faculty.