The need for an intersectionality framework in precision medicine research.

Precision medicine research has seen growing efforts to increase participation of communities that have been historically underrepresented in biomedical research. Marginalized racial and ethnic communities have received particular attention, toward the goal of improving the generalizability of scientific knowledge and promoting health equity. Against this backdrop, research has highlighted three key issues that could impede the promise of precision medicine research: issues surrounding (dis)trust and representation, challenges in translational efforts to improve health outcomes, and the need for responsive community engagement. Existing efforts to address these challenges have predominantly centered on single-dimensional demographic criteria such as race, ethnicity, or sex, while overlooking how these and additional variables, such as disability, gender identity, and socioeconomic factors, can confound and jointly impact research participation. We argue that increasing cohort diversity and the responsiveness of precision medicine research studies to community needs requires an approach that transcends conventional boundaries and embraces a more nuanced, multi-layered, and intersectional framework for data collection, analyses, and implementation. We draw attention to gaps in existing work, highlight how overlapping layers of marginalization might shape and substantiate one another and affect the precision-medicine research cycle, and put forth strategies to facilitate equitable advantages from precision-medicine research to diverse participants and internally heterogeneous communities.

Conceptualizing and Measuring Trust, Mistrust, and Distrust: Implications for Advancing Health Equity and Building Trustworthiness.

Trust is vital to public confidence in health and science, yet there is no consensus on the most useful way to conceptualize, define, measure, or intervene on trust and its related constructs (e.g., mistrust, distrust, and trustworthiness). In this review, we synthesize literature from this wide-ranging field that has conceptual roots in racism, marginalization, and other forms of oppression. We summarize key definitions and conceptual frameworks and offer guidance to scholars aiming to measure these constructs. We also review how trust-related constructs are associated with health outcomes, describe interventions in this field, and provide recommendations for building trust and institutional trustworthiness and advancing health equity. We ultimately call for future efforts to focus on improving the trustworthiness of public health professionals, scientists, health care providers, and systems instead of aiming to increase trust in these entities as they currently exist and behave.

Medical Distrust Among Kidney Transplant Candidates.

BACKGROUND: Medical distrust may hinder kidney transplantation (KT) access. Among KT candidates evaluated for waitlisting, we identified factors associated with high distrust levels and quantified their association with waitlisting. METHODS: Among 812 candidates (2018-2023), we assessed distrust using the Revised Health Care System Distrust Scale across composite, competence, and values subscales. We used linear regression to quantify the associations between candidate and neighborhood-level factors and distrust scores. We used Cox models to quantify the associations between distrust scores and waitlisting. RESULTS: At KT evaluation, candidates who were aged 35-49 years (difference = 1.97, 95% CI: 0.78-3.16), female (difference = 1.10, 95% CI: 0.23-1.97), and Black (difference = 1.47, 95% CI: 0.47-2.47) were more likely to report higher composite distrust score. For subscales, candidates aged 35-49 were more likely to have higher competence distrust score (difference = 1.14, 95% CI: 0.59-1.68) and values distrust score (difference = 0.83, 95% CI: 0.05-1.61). Race/ethnicity (Black, difference = 1.42, 95% CI: 0.76-2.07; Hispanic, difference = 1.52, 95% CI: 0.35-2.69) was only associated with higher values distrust scores. Female candidates reporting higher rescaled values distrust scores (each one point) had a lower chance of waitlisting (aHR = 0.78, 95% CI: 0.63-0.98), whereas this association was not observed among males. Similarly, among non-White candidates, each 1-point increase in both rescaled composite (aHR = 0.87, 95% CI: 0.77-0.99) and values (aHR = 0.82, 95% CI: 0.68-0.99) distrust scores was associated with a lower chance of waitlisting, while there was no association among White candidates. CONCLUSION: Female, younger, and non-White candidates reported higher distrust scores. Values distrust may contribute to the long-standing racial/ethnic and gender disparities in access to KT. Implementing tailored strategies to reduce distrust in transplant care may improve KT access for groups that experience persistent disparities.

Connectome-based individualized prediction of reciprocity propensity and sensitivity to framing: a resting-state functional magnetic resonance imaging study.

BACKGROUND: The social representation theory states that individual differences in reciprocity decisions are composed of a stable central core (i.e., reciprocity propensity, RP) and a contextual-dependent periphery (i.e., sensitivity to the framing effect; SFE, the effect by how the decision is presented). However, the neural underpinnings that explain RP and SFE are still unknown. METHOD: Here, we employed prediction and lesion models to decode resting-state functional connectivity (RSFC) of RP and SFE for reciprocity decisions of healthy volunteers who underwent RS functional magnetic resonance imaging and completed one-shot trust (give frame) and distrust (take frame) games as trustees. RESULTS: Regarding the central core, reciprocity rates were positively associated between the give and take frame. Neuroimaging results showed that inter-network RSFC between the default-mode network (DMN; associated with mentalizing) and cingulo-opercular network (associated with cognitive control) contributed to the prediction of reciprocity under both frames. Regarding the periphery, behavioral results demonstrated a significant framing effect-people reciprocated more in the give than in the take frame. Our neuroimaging results revealed that intra-network RSFC of DMN (associated with mentalizing) contributed dominantly to the prediction of SFE. CONCLUSION: Our findings provide evidence for distinct neural mechanisms of RP and SFE in reciprocity decisions.

Marginalisation and distrust in the context of the COVID-19 vaccination programme: experiences of communities in a northern UK city region.

BACKGROUND: There are clear inequalities in COVID - 19 vaccination rates amongst marginalised groups, with lower rates for some minoritised ethnic and religious groups, younger people, those living in more deprived areas, and with lower socio-economic status. Existing research focuses on psychological and socio-economic factors that influence vaccine uptake and does not explore broader social and historical contexts. Understanding inequalities in COVID-19 vaccine uptake requires a critical examination of the drivers of, and barriers to, vaccination. METHODS: We present findings from a co-designed qualitative research study undertaken during the COVID-19 pandemic. Focus groups and interviews were used to examine the context underpinning responses to the COVID-19 vaccination in Greater Manchester, particularly focussing on experiences of marginalisation. Thematic framework analysis was used to analyse the data. RESULTS: We found that the public's responses to the COVID-19 vaccination programme are intertwined with a longstanding history of institutional distrust and disenfranchisement, resulting from experiences of marginalisation and social inequalities. This was exacerbated further by the disproportionate impacts of the COVID-19 pandemic on minoritised ethnic groups, younger people, and those with existing health conditions. CONCLUSIONS: Histories of structural inequalities experienced by minoritised groups invoked feelings of suspicion and scepticism at the motivations of the agencies behind the vaccination rollout. This highlights the need for a contextualised analysis of attitudes to vaccines, considering pre-existing inequalities, which may be especially relevant for conceptualising public responses to the vaccination programme. Finally, our study shows the important ways in which public (dis)trust can impact public health policies. We recommend this should be incorporated into responses to future public health crises.

COVID-19 vaccine hesitancy among American Indian and Alaska native college students: the roles of discrimination, historical trauma, and healthcare system distrust.

For American Indians and Alaska Native (AIAN) and other communities of color, experiences with discrimination and historical trauma may contribute to healthcare system distrust and negatively affect health care decisions, including vaccination. A saturated path analysis was conducted to examine the direct and indirect associations of thoughts regarding historical losses (of culture, language, and traditional ways) and AIAN racial discrimination with historical loss associated distress, healthcare system distrust, and COVID-19 vaccine hesitancy among AIAN college students (N = 391). Historical loss thoughts and experiences with racial discrimination were strongly associated with each other, and both were uniquely associated with greater historical loss associated distress. In turn, historical loss associated distress was associated with greater healthcare system distrust, which in turn was associated with greater likelihood of being COVID-19 vaccine hesitant. While further research is needed, the findings suggest that to address health disparities for AIAN people it is necessary to consider how to best overcome healthcare system distrust and factors that contribute to it, including historical trauma and contemporary experiences with discrimination.

Trust and distrust in food among non-dependent elderly people in Spain. Study on socio-cultural representations through the analysis of cultural domains.

The social and cultural representations of food are essential when it comes to understanding the perception of risk and the trust/distrust that people place on it. In this paper, we analyse the attributes and categories that non-dependent older people aged 65 and over living in Spain use when talking about trust/distrust in relation to food. In order to explore how they manifest different social meanings, we have conducted a study based on an analysis of cultural domains. The results of examining free-listing and pile-sort techniques were triangulated with the narratives obtained from interviews, life histories, food diaries and participatory workshops. The ethnographic research was conducted between June 2021 and June 2022 in the autonomous communities of Andalusia and Catalonia as well as the Valencian Community. Understanding the criteria for trust and distrust through the analysis of cultural domains allows us to better comprehend what food risks are perceived by older people and what value they place on food safety in their food choices. This study aims to provide qualified input for the development of healthier eating habits with recommendations for making ageing an easier process.

Time and memory distrust shape the dynamics of recollection and belief-in-occurrence.

The current study examined how people's metamemory judgments of recollection and belief-in-occurrence change over time. Furthermore, we examined to what extent these judgments are affected by memory distrust - the subjective appraisal of one's memory functioning - as measured by the Memory Distrust Scale (MDS) and the Squire Subjective Memory Scale (SSMQ). Participants (N = 234) studied pictorial stimuli and were tested on some of these stimuli later in the same session, but were tested on other stimuli 1, 2, 4, 8, and 17 days later. Recollection and belief ratings were correlated highly and followed similar declining patterns over time. However, belief decreased relatively more slowly than recollection, such that the discrepancy between recollection and belief increased over time. Memory distrust moderated the association between recollection and belief, with this association being weaker among people who reported greater (versus lower) memory distrust. Memory distrust also interacted with retention period to predict memory judgments. Two measures of memory distrust diverged in their predictive power. In particular, only the MDS predicted the spontaneous reporting of nonbelieved memories. Our results provide support to the theoretical perspective that belief-in-occurrence is a summative judgment informed not only by recollective phenomenology but also by metamemorial beliefs.

Does Trust Lead to the Adoption of a Productive Climate Attitude? Relationship Between Trust, Corruption, and Climate Attitude in Developing Regions.

This study examines the relationship between institutional trust from an individual and societal perspective and perceived corruption and climate attitudes of individuals in Latin America. To this end, multilevel modeling was used to test whether the attitudes of individuals from 285 regions of Latin America are influenced by these constructs. Based on the results, it was found that in contrast to studies in developed countries, where institutional trust is positively associated with pro-climate attitudes, in Latin America institutional trust acts as an inhibiting factor and is inversely related to climate attitudes. Furthermore, the perception of corruption in public institutions was also identified as a factor inhibiting collective action to combat climate change. Moderation analysis revealed that individuals' level of education significantly influences this relationship, with a notable difference in climate attitudes between individuals with low and high levels of trust, especially among those with less education. These findings highlight the importance of taking regional specificities into account when examining the relationship between institutional trust, perceptions of corruption, and climate attitudes, and underscore the need for public policies that promote transparency and accountability of institutions to foster effective collective action on climate change.

Longitudinal Associations Between Interpersonal Distrust and Social Aggression During College: Disentangling the Within-Person Process from Stable Between-Person Differences.

There is a dearth of information on the relationship between interpersonal distrust and social aggression in the youth, although both may lead to negative interpersonal relationships. Furthermore, scholars have not explored whether interpersonal distrust influences later social aggression over time at the within-person level. This study used five wave longitudinal data to investigate the longitudinal association between interpersonal distrust and social aggression and the role of hostile attribution bias in this relationship; notably, it used a relatively rigorous approach-the random intercept cross-lagged panel model-to disentangle within-person processes from stable between-person differences. The final number of participants included 1053 undergraduate students (677 female students and 376 male students), and 64.3% were female students, with a mean age of 18.45 years (SD = 0.95) at first measurement. Participants completed assessments for interpersonal distrust, hostile attribution bias, and social aggression at five time points across 6-month intervals. At the within-person level, the results revealed that interpersonal distrust was a predictor of later social aggression and that hostile attribution bias acted as a longitudinal mediator in this relationship. This result indicates that to enhance interpersonal harmony and reduce individual hostility and aggression toward others, intervention programs should aim to reduce interpersonal distrust.

Water Insecurity Indicators Are Associated with Lower Diet and Beverage Quality in a National Survey of Lower-Income United States Adults.

BACKGROUND: Tap water distrust and avoidance, indicators of water insecurity, are prevalent in marginalized United States populations. As future environmental challenges stress water resources, further understanding of the scope of water insecurity and its impact on diet quality is needed, particularly in vulnerable United States populations. OBJECTIVES: To evaluate associations between 3 potential indicators of water insecurity-1) perception of tap water safety for drinking, 2) perception of tap water safety for cooking, and 3) tap water avoidance-and dietary quality and beverage intake in lower-income United States adults. METHODS: A cross-sectional, web-based survey was fielded to 1798 lower-income (<250% federal poverty guidelines) United States adults. Participants answered questions detailing tap water safety perceptions and avoidance, beverage intake, dietary intake (30-d prime diet quality score), and sociodemographic covariates. Sociodemographic differences in drinking water insecurity measures were evaluated using chi-square and Fisher-Freeman-Halton tests. Associations between water insecurity measures and dietary outcomes were assessed using generalized linear models adjusted for sociodemographic covariates, and effect modification by sociodemographic covariates was assessed. RESULTS: Over half of the adults surveyed experienced some aspect of water insecurity. Measures of water security differed significantly by sociodemographic covariates (Ps < 0.05), with higher percentages of women and gender-nonconforming persons, minoritized racial and ethnic groups, lower-income groups, and food-insecure adults reporting indicators of water insecurity. Presence of any water insecurity was associated with lower diet quality (ß = -1.07; 95% CI: -2.11, -0.03; P = 0.04), lower tap water intake (relative difference [RD] = 0.35; 95% CI: 1.28, 2.12; P < 0.0001), higher bottled water intake (RD = 1.64; 95% CI: 1.28, 2.12; P = 0.0001), and higher sugar-sweetened beverages intake frequency (frequency ratio = 1.13; 95% CI: 1.01, 1.27; P = 0.03). CONCLUSIONS: Water insecurity indicators are associated with poorer diet quality and beverage intake in a population of United States adults with lower-incomes. Addressing the intersection of water insecurity, food security, environmental impacts, and nutrition may help to improve the well-being and resiliency of vulnerable populations.

A 50-year-old refugee woman with a lithopedion and a lifetime of trauma: a case report.

BACKGROUND: Lithopedion is a term that refers to a fetus that has calcified or changed to bone. The calcification may involve the fetus, membranes, placenta, or any combination of these structures. It is an extremely rare complication of pregnancy and can remain asymptomatic or present with gastrointestinal and/or genitourinary symptoms. CASE PRESENTATION: A 50-year-old Congolese refugee with a nine-year history of retained fetus after a fetal demise was resettled to the United States (U.S.). She had chronic symptoms of abdominal pain and discomfort, dyspepsia, and gurgling sensation after eating. She experienced stigmatization from healthcare professionals in Tanzania at the time of the fetal demise and subsequently avoided healthcare interaction whenever possible. Upon arrival to the U.S., evaluation of her abdominal mass included abdominopelvic imaging which confirmed the diagnosis of lithopedion. She was referred to gynecologic oncology for surgical consultation given intermittent bowel obstruction from underlying abdominal mass. However, she declined intervention due to fear of surgery and elected for symptom monitoring. Unfortunately, she passed away due to severe malnutrition in the context of recurrent bowel obstruction due to the lithopedion and continued fear of seeking medical care. CONCLUSION: This case demonstrated a rare medical phenomenon and the impact of medical distrust, poor health awareness, and limited access to healthcare among populations most likely to be affected by a lithopedion. This case highlighted the need for a community care model to bridge the gap between the healthcare team and newly resettled refugees.

Preference for cheap-and-easy memory verification strategies is strongest among people with high memory distrust.

When choosing strategies for verifying one's memory, people are more influenced by the perceived cost of using a strategy than by its likelihood of yielding reliable information (i.e., cheap-strategy bias). The current preregistered study investigated whether people with high memory distrust are less likely to exhibit this bias than their low memory distrust counterparts. Participants (N = 535) imagined a scenario in which they witnessed an accident and were then led by friends to question their memories about the accident. Participants had to propose five strategies for verifying that particular memory. Following this, they rated each strategy's cost, reliability, and their likelihood of using it, as well as completing two validated measures of trait memory distrust. Contrary to our prediction, compared with participants with low memory distrust, participants with higher memory distrust exhibited a larger cheap-strategy bias. Follow-up analyses suggested that compared with memory-trusters, memory distrusters' strategy choices were more influenced by a strategy's perceived cost, and less influenced by its perceived reliability. Our results suggest that people who are more skeptical about their memories may be more cynical about the worthwhileness of verifying their memory, which could make them especially susceptible to misinformation acceptance and false memory creation.

Perceptions and experiences of prostate cancer patients in a public tertiary hospital in urban South Africa.

ABSTRACTProstate cancer is among the most prevalent forms of cancer worldwide and is reported to have the highest incidence, mortality, and 5-year prevalence rate of all cancers among men living in Africa. Despite this widespread burden in the African continent, little is known about the perspectives and experience of prostate cancer among African men. To further understand experiences among patients living in urban South Africa, we conducted in-depth, semi-structured qualitative interviews to examine the perceptions and experiences of 28 Black African prostate cancer patients receiving treatment at a major tertiary hospital in Johannesburg, South Africa. Our data explored four major areas of patients' experiences with prostate cancer: detection, diagnosis, treatment, and follow-up care. Our results showed that the experience of living with prostate cancer among low-income, Black South African men is a stressful and emotionally painful experience due in part to men feeling that they had insufficient knowledge about their own condition and feeling disempowered or ill-equipped to manage their cancer. These feelings were strongly associated with distrust or dissatisfaction with physicians and the health care system. Resilience factors include social support from family, friends, and religious communities, acceptance of their diagnosis, religion, and positive appraisals of their medical care.

Conceptualizing Trust and Distrust as Alternative Stable States: Lessons from the Flint Water Crisis.

Despite the universally recognized importance of fostering trust and avoiding distrust in governance relationships, there remains considerable debate on core questions like the relation between (dis)trust and the evaluations of the characteristics that make a governance agent appear (un)worthy of trust. In particular, it remains unclear whether levels of (dis)trust simply follow levels of (dis)trustworthiness-such that building trust is primarily a question of increasing evidence of trustworthiness and avoiding evidence of distrustworthiness, or if their dynamics are more complicated. The current paper adds novel theory for thinking about the management of trust and distrust in the governance context through the application of principles borrowed from resilience theory. Specifically, we argue that trust and distrust exist as distinct, self-reinforcing (i.e., stable) states separated by a threshold. We then theorize as to the nature of the self-reinforcing processes and use qualitative data collected from and inductively coded in collaboration with Flint residents as part of a participatory process to look for evidence of our argument in a well-documented governance failure. We conclude by explaining how this novel perspective allows for clearer insight into the experience of this and other communities and speculate as to how it may help to better position governance actors to respond to future crises.

People's Perceptions and Coping Strategies During the COVID-19 Pandemic: A Phenomenological-Longitudinal Study in Bangladesh.

By emphasizing the Terror Management Theory, this study investigated the participants' perceptions, psychological experiences, coping strategies, and behavioral changes during the pandemic in Bangladesh in two phases: first, after the pandemic's immediate outbreak, and second, after 3 months of the pandemic (daily infection cases were very high). To perform the research, an empirical-phenomenological method was used. Findings indicate that at the first stage, participants' death phobia was extremely high, and poor medical facilities, religious struggles, imprudent behavior of others, concerns for family members, and a tendency to compare the socioeconomic status with other developed countries affected participants' emotions severely. Later on, participants' perceptions of the disease changed significantly. This study highlights that people's behavior varies depending on whether the thought of death is in the center or on the periphery of their attention. In both stages, religious faith and rituals played a crucial role in coping with the crisis situation.

Prevalence and prediction of medical distrust in a diverse medical genomic research sample.

PURPOSE: Medical distrust has been identified as a persistent barrier to medical care, affecting preventative screening, treatment uptake, and treatment adherence. Despite this, little research to date has examined medical distrust in a genomic medicine context. The goal of this work was to assess the prevalence of medical distrust in a genomic medicine research study and examine patient-level demographic, access-related, and health-status characteristics that predict medical distrust. METHODS: We assessed medical distrust in a research sample of adults (N = 967) receiving genomic sequencing to screen for hereditary risk of cancer syndromes in the United States. We used multiple predictive variable selection models to determine predictors of medical distrust followed by marginal mean analyses to characterize the relationships. RESULTS: The prevalence of medical distrust was 32%. The final model indicated that Black and African American race/ethnicity; trans, nonbinary, or nonidentifying gender identity; high education; low income; low access to health care; and poor Short Form 12 mental health composite scores predict medical distrust. CONCLUSION: Medical distrust may pose similar challenges to genomic sequencing, as it does in other medical contexts. The pattern of variables that predict distrust suggest that increasing access and accommodation for stigmatized and underserved communities may help overcome the negative effects of medical distrust.

Using Water Intake Dietary Recall Data to Provide a Window into US Water Insecurity.

BACKGROUND: In the United States, problems with the provision of safe, affordable water have resulted in an increasing number of adults who avoid their tap water, which could indicate underlying water insecurity. Dietary recalls provide critical nutritional surveillance data, yet have been underexplored as a water insecurity monitoring tool. OBJECTIVES: This article aims to demonstrate how water intake variables from dietary recall data relate to and predict a key water insecurity proxy, that is, tap water avoidance. METHODS: Using 2005-2018 NHANES data from 32,329 adults, I examine distributions and trends of mean intakes of total, plain (sum of tap and bottled water), tap, and bottled water, and percentage consuming no tap and exclusive bottled water. Second, I use multiple linear and logistic regressions to test how tap water avoidance relates to plain water intake and sugar-sweetened beverage (SSB) consumption. Next, I use receiver operating characteristics (ROC) curves to test the predictive accuracy of no plain water, no tap, and exclusive bottled water intake, and varying percentages of plain water consumed from tap water compared with tap water avoidance. RESULTS: Trends indicate increasing plain water intake between 2005 and 2018, driven by increasing bottled water intake. In 2017-18, 51.4% of adults did not drink tap water on a given day, whereas 35.8% exclusively consumed bottled water. Adults who avoided their tap water consumed less tap and plain water, and significantly more bottled water and SSBs on a given day. No tap intake and categories of tap water intake produced 77% and 78% areas under the ROC curve in predicting tap water avoidance. CONCLUSIONS: This study demonstrates that water intake variables from dietary recalls can be used to accurately predict tap water avoidance and provide a window into water insecurity. Growing reliance on bottled water could indicate increasing concerns about tap water.

Responding to healthcare distrust among underserved communities: Phase II.

OBJECTIVE: Medical distrust is both a psychosocial construct and an underappreciated individual social determinant of health with the potential to affect oncology care and clinical trial participation. A community-based participatory research effort, called the Forward Movement Project (FMP), identified multilevel factors affecting trust for healthcare and research in an underserved urban community. In FMP Phase II, we implemented a community-responsive approach to provide lay-oriented education and address misinformation, with the goal of beginning to remediate distrust for healthcare systems and biomedical research. METHODS: Community residents (N = 154 adults, 64% male, M = 61.5 years old, 53% annual income <$10,000, 83% African American/Black) engaged in participant-driven dialogues with oncology clinicians/clinical researchers and support services professionals. A program evaluation focused on trust for healthcare and biomedical research. RESULTS: Participants reported positive evaluations of both the program and the cancer center clinicians and staff, who were rated as trustworthy (80% strong agreement). However, trust for healthcare systems ("Strongly agree" = 58%) and medical researchers ("Strongly agree" = 50%) following the program was moderate. Over half of the sample (52%) strongly agreed they would participate in a clinical trial compared to before joining this study. CONCLUSION: Findings supported the user-generated program approach. The FMP is an example of a model for true community engaged research and has implications for rebuilding trust in healthcare and research.

An incongruous intervention: Exploring the role of anti-institutionalism in less-educated individual's limited uptake of nutrition information.

Despite many efforts, nutritional health interventions have been largely unable to reduce health inequalities between less- and more-educated individuals, since their effectiveness among the former is often limited. Conventionally, adverse financial circumstances and poorer health literacy are argued to explain this. Drawing on recent sociological insights, we propose a complementing and novel sociocultural explanation based on how contemporary power relations in society breed anti-institutionalism among less-educated individuals. Using a survey of a representative sample of the Dutch population (n = 2398), we focus on the strategic case of the lower uptake of nutrition information among less-educated individuals. We find that two aspects of anti-institutionalism, i.e. institutional distrust and antipaternalism, substantially account for the educational gap in the uptake of nutrition information. This indicates that current nutrition information inspires opposition among less-educated individuals. More generally, it suggests that the development of nutritional health interventions should avoid invoking institutional connotations, to increase their acceptance by those who commonly need these most.