With the emergence of new health information technologies, health information can be shared across networks, with or without patients' awareness and/or their consent. It is often argued that there ...can be an ethical obligation to participate in biomedical research, motivated by altruism, particularly when risks are low. In this study, we explore whether altruism contributes to the belief that there is an ethical obligation to share information about one's health as well as how other health care experiences, perceptions, and concerns might be related to belief in such an obligation.
We conducted an online survey using the National Opinion Research Center's (NORC) probability-based, nationally representative sample of U.S. adults. Our final analytic sample included complete responses from 2069 participants. We used multivariable logistic regression to examine how altruism, together with other knowledge, attitudes, and experiences contribute to the belief in an ethical obligation to allow health information to be used for research.
We find in multivariable regression that general altruism is associated with a higher likelihood of belief in an ethical obligation to allow one's health information to be used for research (OR = 1.22, SE = 0.14, p = 0.078). Trust in the health system and in care providers are both associated with a significantly higher likelihood of believing there is an ethical obligation to allow health information to be used (OR = 1.48, SE = 0.76, p<0.001; OR = 1.58, SE = 0.26, p<0.01, respectively).
Belief that there is an ethical obligation to allow one's health information to be used for research is shaped by altruism and by one's experience with, and perceptions of, health care and by general concerns about the use of personal information. Altruism cannot be assumed and researchers must recognize the ways encounters with the health care system influence (un)willingness to share one's health information.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Cigarette smoking is an environmental risk factor for many chronic diseases, and disease risk can often be managed by smoking control. Smoking can induce cellular and molecular changes, including ...epigenetic modification, but the short- and long-term epigenetic modifications caused by cigarette smoking at the gene level have not been well understood. Recent studies have identified smoking-related DNA methylation (DNAm) sites in Caucasians. To determine whether the same DNAm sites associate with smoking in African Americans, and to identify novel smoking-related DNAm sites, we conducted a methylome-wide association study of cigarette smoking using a discovery sample of 972 African Americans, and a replication sample of 239 African Americans with two array-based methods. Among 15 DNAm sites significantly associated with smoking after correction for multiple testing in our discovery sample, 5 DNAm sites are replicated in an independent cohort, and 14 sites in the replication sample have effects in the same direction as in the discovery sample. The top two smoking-related DNAm sites in
F2RL3
(factor II receptor-like 3) and
GPR15
(G-protein-coupled receptor 15) observed in African Americans are consistent with previous findings in Caucasians. The associations between the replicated DNAm sites and smoking remain significant after adjusting for genetic background. Despite the distinct genetic background between African Americans and Caucasians, the DNAm from the two ethnic groups shares common associations with cigarette smoking, which suggests a common molecular mechanism of epigenetic modification influenced by environmental exposure.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
To compare population-based sterilization rates between Latinas/os and non-Latinas/os sterilized under California's eugenics law.
We used data from 17 362 forms recommending institutionalized ...patients for sterilization between 1920 and 1945. We abstracted patient gender, age, and institution of residence into a data set. We extracted data on institution populations from US Census microdata from 1920, 1930, and 1940 and interpolated between census years. We used Spanish surnames to identify Latinas/os in the absence of data on race/ethnicity. We used Poisson regression with a random effect for each patient's institution of residence to estimate incidence rate ratios (IRRs) and compare sterilization rates between Latinas/os and non-Latinas/os, stratifying on gender and adjusting for differences in age and year of sterilization.
Latino men were more likely to be sterilized than were non-Latino men (IRR = 1.23; 95% confidence interval CI = 1.15, 1.31), and Latina women experienced an even more disproportionate risk of sterilization relative to non-Latinas (IRR = 1.59; 95% CI = 1.48, 1.70).
Eugenic sterilization laws were disproportionately applied to Latina/o patients, particularly Latina women and girls. Understanding historical injustices in public health can inform contemporary public health practice.
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CEKLJ, DOBA, FSPLJ, IZUM, KILJ, NUK, ODKLJ, OILJ, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK, VSZLJ
Identifying genetic variants that are associated with variation in DNA methylation, an analysis commonly referred to as methylation quantitative trait locus (meQTL) mapping, is an important first ...step towards understanding the genetic architecture underlying epigenetic variation. Most existing meQTL mapping studies have focused on individuals of European ancestry and are underrepresented in other populations, with a particular absence of large studies in populations with African ancestry. We fill this critical knowledge gap by performing a large-scale cis-meQTL mapping study in 961 African Americans from the Genetic Epidemiology Network of Arteriopathy (GENOA) study. We identify a total of 4,565,687 cis-acting meQTLs in 320,965 meCpGs. We find that 45% of meCpGs harbor multiple independent meQTLs, suggesting potential polygenic genetic architecture underlying methylation variation. A large percentage of the cis-meQTLs also colocalize with cis-expression QTLs (eQTLs) in the same population. Importantly, the identified cis-meQTLs explain a substantial proportion (median = 24.6%) of methylation variation. In addition, the cis-meQTL associated CpG sites mediate a substantial proportion (median = 24.9%) of SNP effects underlying gene expression. Overall, our results represent an important step toward revealing the co-regulation of methylation and gene expression, facilitating the functional interpretation of epigenetic and gene regulation underlying common diseases in African Americans.
Objective
To measure public trust in a health information sharing in a broadly defined health system (system trust), inclusive of health care, public health, and research; to identify individual ...characteristics that predict system trust; and to consider these findings in the context of national health initiatives (e.g., learning health systems and precision medicine) that will expand the scope of data sharing.
Data Sources
Survey data (n = 1,011) were collected in February 2014.
Study Design
We constructed a composite index of four dimensions of system trust—competency, fidelity, integrity, and trustworthiness. The index was used in linear regression evaluating demographic and psychosocial predictors of system trust.
Data Collection
Data were collected by GfK Custom using a nationally representative sample and analyzed in Stata 13.0.
Principal Findings
Our findings suggest the public's trust may not meet the needs of health systems as they enter an era of expanded data sharing. We found that a majority of the U.S. public does not trust the organizations that have health information and share it (i.e., the health system) in one or more dimensions. Together, demographic and psychosocial factors accounted for ~18 percent of the observed variability in system trust. Future research should consider additional predictors of system trust such as knowledge, attitudes, and beliefs to inform policies and practices for health data sharing.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, SIK, UILJ, UKNU, UL, UM, UPUK
The 2019/2020 COVID outbreak has surfaced as a global pandemic. The news has carried stories of the heroic efforts of medical and other health practitioners, with public health officials charting the ...course of spread. In an urban center like Detroit, the generosity of everyday citizens and church organizations has also played an important role. This inspection of the pandemic from the view of Detroit will examine the epidemiology of the coronavirus, translation of professional practice into people's awareness of the chronic disease risk factors which are prevalent in Detroit, moral and ethical views on the distribution of resources, and three major ways that religious faith has helped to sustain people's health and welfare in the midst of the broad social challenges posed by this novel coronavirus.
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DOBA, EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, IZUM, KILJ, KISLJ, MFDPS, NLZOH, NUK, OBVAL, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UILJ, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
Although considerable evidence exists on the association between negative health outcomes and daily experiences of discrimination, less is known about such experiences in the health care system at ...the national level. It is critically necessary to measure and address discrimination in the health care system to mitigate harm to patients and as part of the larger ongoing project of responding to health inequities.
To (1) identify the national prevalence of patient-reported experiences of discrimination in the health care system, the frequency with which they occur, and the main types of discrimination experienced and (2) examine differences in the prevalence of discrimination across demographic groups.
This cross-sectional national survey fielded online in May 2019 used a general population sample from the National Opinion Research Center's AmeriSpeak Panel. Surveys were sent to 3253 US adults aged 21 years or older, including oversamples of African American respondents, Hispanic respondents, and respondents with annual household incomes below 200% of the federal poverty level.
Analyses drew on 3 survey items measuring patient-reported experiences of discrimination, the primary types of discrimination experienced, the frequency with which they occurred, and the demographic and health-related characteristics of the respondents. Weighted bivariable and multivariable logistic regressions were conducted to assess associations between experiences of discrimination and several demographic and health-related characteristics.
Of 2137 US adult respondents who completed the survey (66.3% response rate; unweighted 51.0% female; mean SD age, 49.6 16.3 years), 458 (21.4%) reported that they had experienced discrimination in the health care system. After applying weights to generate population-level estimates, most of those who had experienced discrimination (330 72.0%) reported experiencing it more than once. Of 458 reporting experiences of discrimination, racial/ethnic discrimination was the most common type (79 17.3%), followed by discrimination based on educational or income level (59 12.9%), weight (53 11.6%), sex (52 11.4%), and age (44 9.6%). In multivariable analysis, the odds of experiencing discrimination were higher for respondents who identified as female (odds ratio OR, 1.88; 95% CI, 1.50-2.36) and lower for older respondents (OR, 0.98; 95% CI, 0.98-0.99), respondents earning at least $50 000 in annual household income (OR, 0.76; 95% CI, 0.60-0.95), and those reporting good (OR, 0.59; 95% CI, 0.46-0.75) or excellent (OR, 0.41; 95% CI, 0.31-0.56) health compared with poor or fair health.
The results of this study suggest that experiences of discrimination in the health care system appear more common than previously recognized and deserve considerable attention. These findings contribute to understanding of the scale at which interpersonal discrimination occurs in the US health care system and provide crucial evidence for next steps in assessing the risks and consequences of such discrimination. The findings also point to a need for further analysis of how interpersonal discrimination interacts with structural inequities and social determinants of health to build effective responses.
Living in a disadvantaged neighborhood is associated with poor health outcomes even after accounting for individual-level socioeconomic factors. The chronic stress of unfavorable neighborhood ...conditions may lead to dysregulation of the stress reactivity and inflammatory pathways, potentially mediated through epigenetic mechanisms such as DNA methylation. We used multi-level models to examine the relationship between 2 neighborhood conditions and methylation levels of 18 genes related to stress reactivity and inflammation in purified monocytes from 1,226 participants of the Multi-Ethnic Study of Atherosclerosis (MESA), a population-based sample of US adults. Neighborhood socioeconomic disadvantage, a summary of 16 census-based metrics, was associated with DNA methylation False discovery rate (FDR) q-value ≤ 0.1 in 2 out of 7 stress-related genes evaluated (CRF, SLC6A4) and 2 out of 11 inflammation-related genes (F8, TLR1). Neighborhood social environment, a summary measure of aesthetic quality, safety, and social cohesion, was associated with methylation in 4 of the 7 stress-related genes (AVP, BDNF, FKBP5, SLC6A4) and 7 of the 11 inflammation-related genes (CCL1, CD1D, F8, KLRG1, NLRP12, SLAMF7, TLR1). High socioeconomic disadvantage and worse social environment were primarily associated with increased methylation. In 5 genes with significant associations between neighborhood and methylation (FKBP5, CD1D, F8, KLRG1, NLRP12), methylation was associated with gene expression of at least one transcript. These results demonstrate that multiple dimensions of neighborhood context may influence methylation levels and subsequent gene expression of stress- and inflammation-related genes, even after accounting for individual socioeconomic factors. Further elucidating the molecular mechanisms underlying these relationships will be important for understanding the etiology of health disparities.
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BFBNIB, GIS, IJS, KISLJ, NUK, PNG, UL, UM, UPUK
Most existing expression quantitative trait locus (eQTL) mapping studies have been focused on individuals of European ancestry and are underrepresented in other populations including populations with ...African ancestry. Lack of large-scale well-powered eQTL mapping studies in populations with African ancestry can both impede the dissemination of eQTL mapping results that would otherwise benefit individuals with African ancestry and hinder the comparable analysis for understanding how gene regulation is shaped through evolution. We fill this critical knowledge gap by performing a large-scale in-depth eQTL mapping study on 1,032 African Americans (AA) and 801 European Americans (EA) in the GENOA cohort. We identified a total of 354,931 eSNPs in AA and 371,309 eSNPs in EA, with 112,316 eSNPs overlapped between the two. We found that eQTL harboring genes (eGenes) are enriched in metabolic pathways and tend to have higher SNP heritability compared to non-eGenes. We found that eGenes that are common in the two populations tend to be less conserved than eGenes that are unique to one population, which are less conserved than non-eGenes. Through conditional analysis, we found that eGenes in AA tend to harbor more independent eQTLs than eGenes in EA, suggesting potentially diverse genetic architecture underlying expression variation in the two populations. Finally, the large sample sizes in GENOA allow us to construct accurate expression prediction models in both AA and EA, facilitating powerful transcriptome-wide association studies. Overall, our results represent an important step toward revealing the genetic architecture underlying expression variation in African Americans.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Objectives This study sought to identify genetic modifiers of β-blocker response and long-term survival in heart failure (HF). Background Differences in β-blocker treatment effect between Caucasians ...and African Americans with HF have been reported. Methods This was a prospective cohort study of 2,460 patients (711 African American, 1,749 Caucasian) enrolled between 1999 and 2007; 2,039 patients (81.7%) were treated with a β-blocker. Each was genotyped for β1-adrenergic receptor ( ADRB1 ) Arg389>Gly and G-protein receptor kinase 5 ( GRK5 ) Gln41>Leu polymorphisms, which are more prevalent among African Americans than Caucasians. The primary end point was survival time from HF onset. Results There were 765 deaths during follow-up (median 46 months). β-blocker treatment increased survival in Caucasians (log-rank p = 0.00038) but not African Americans (log-rank p = 0.327). Among patients not taking β-blockers, ADRB1 Gly389 was associated with decreased survival in Caucasians (hazard ratio HR: 1.98, 95% confidence interval CI: 1.1 to 3.7, p = 0.03) whereas GRK5 Leu41 was associated with improved survival in African Americans (HR: 0.325, CI: 0.133 to 0.796, p = 0.01). African Americans with ADRB1 Gly389Gly GRK5 Gln41Gln derived a similar survival benefit from β-blocker therapy (HR: 0.385, 95% CI: 0.182 to 0.813, p = 0.012) as Caucasians with the same genotype (HR: 0.529, 95% CI: 0.326 to 0.858, p = 0.0098). Conclusions These data show that differences caused by β-adrenergic receptor signaling pathway gene polymorphisms, rather than race, are the major factors contributing to apparent differences in the β-blocker treatment effect between Caucasians and African Americans; proper evaluation of treatment response should account for genetic variance.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
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