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.

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.

Design and Analytic Methods to Evaluate Multilevel Interventions to Reduce Health Disparities: Rigorous Methods Are Available.

In June 2022, the NIH Office of Disease Prevention (ODP) issued a Call for Papers for a Supplemental Issue to Prevention Science on Design and Analytic Methods to Evaluate Multilevel Interventions to Reduce Health Disparities. ODP sought to bring together current thinking and new ideas about design and analytic methods for studies aimed at reducing health disparities, including strategies for balancing methodological rigor with design feasibility, acceptability, and ethical considerations. ODP was particularly interested in papers on design and analytic methods for parallel group- or cluster-randomized trials (GRTs), stepped-wedge GRTs, group-level regression discontinuity trials, and other methods appropriate for evaluating multilevel interventions. In this issue, we include 12 papers that report new methods, provide examples of strong applications of existing methods, or provide guidance on developing multilevel interventions to reduce health disparities. These papers provide examples showing that rigorous methods are available for the design and analysis of multilevel interventions to reduce health disparities.

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.

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.

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.

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.

A Study Examining the Usefulness of a New Measure of Research Engagement.

INTRODUCTION: Engagement of relevant stakeholders' ideas, opinions, and concerns is critical to the success of modern research projects. We have developed a tool to measure stakeholder engagement, called the Research Engagement Survey Tool (REST). The purpose of this paper is to present the implementation and uptake of the stakeholder engagement measure REST among research teams, including the assessment of barriers and facilitating factors for use of the new research engagement measure in practice. METHODS: In this implementation study, project team members participated in baseline and follow-up web-based surveys. Web-based interviews were conducted with a subset of project teams that implemented the REST. On the baseline survey, project teams were asked to provide details about up to three ongoing or recently completed projects, were asked if they agreed with compensation for REST completion, and were asked if they would like to send the survey to stakeholders or would prefer our project team to email their project stakeholders. Follow-up surveys contained questions on reactions to implementing REST and results of REST. RESULTS: Project team members/researchers who completed the baseline survey (n=86) were mostly female (79%) and Non-Hispanic/Latino(a) White (76%). Those who implemented REST were also mostly female (86%) and Non-Hispanic/Latino(a) White (71%), with an average of 11 years in academic research. About 98% of all participants completing the baseline survey had the capacity to survey partners, while 100% of all teams who implemented REST did. A small portion of respondents indicated the time commitment of REST would be a barrier (29% of baseline survey respondents, 10% of those who implemented REST) and indicated workload would be a barrier (31% of baseline survey respondents, 14% of those who implemented REST). DISCUSSION: The data presented here indicate that REST implementation is feasible in a volunteer group of ongoing research projects.

Rapid Community Engagement in Response to SARS-CoV-2 Funding Opportunities: New York City, 2020‒2021.

In response to fast-turnaround funding opportunities, collaborations have been forming across the country to address severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) disparities. Here we describe the process, notes from the field, and evaluation results from a new collaboration involving multiple partners, formed in October 2020 in New York City as part of the Rapid Acceleration of Diagnostics initiative. We used the validated Research Engagement Survey Tool to evaluate the partnership. Results can inform future research and improve engagement efforts aimed at reducing SARS-CoV-2 disparities. (Am J Public Health. 2022;112(S9):S904-S908. https://doi.org/10.2105/AJPH.2022.307072).

Impact of education on APOL1 testing attitudes among prospective living kidney donors.

It is unknown how providing prospective living donors with information about APOL1, including the benefits and drawbacks of testing, influences their desire for testing. In this study, we surveyed 102 participants with self-reported African ancestry and positive family history of kidney disease, recruited from our nephrology waiting room. We assessed views on APOL1 testing before and after presentation of a set of potential benefits and drawbacks of testing and quantified the self-reported level of influence individual benefits and drawbacks had on participants' desire for testing in the proposed context of living donation. The majority of participants (92%) were aware of organ donation and more than half (56%) had considered living donation. And though we found no significant change in response following presentation of the potential benefits and the drawbacks of APOL1 testing by study end significance, across all participants, "becoming aware of the potential risk of kidney disease among your immediate family" was the benefit with the highest mean influence (3.3±1.4), while the drawback with the highest mean influence (2.9±1.5) was "some transplant centers may not allow you to donate to a loved one". This study provides insights into the priorities of prospective living donors and suggests concern for how the information affects family members may strongly influence desires for testing. It also highlights the need for greater community engagement to gain a deeper understanding of the priorities that influence decision making on APOL1 testing.

A pilot pragmatic trial of a "what matters most"-based intervention targeting intersectional stigma related to being pregnant and living with HIV in Botswana.

We conducted a pilot trial of an intervention targeting intersectional stigma related to being pregnant and living with HIV while promoting capabilities for achieving 'respected motherhood' ('what matters most') in Botswana. A pragmatic design allocated participants to the intervention (N = 44) group and the treatment-as-usual (N = 15) group. An intent-to-treat, difference-in-difference analysis found the intervention group had significant decreases in HIV stigma (d = - 1.20; 95% CI - 1.99, - 0.39) and depressive symptoms (d = - 1.96; 95% CI - 2.89, - 1.02) from baseline to 4-months postpartum. Some, albeit less pronounced, changes in intersectional stigma were observed, suggesting the importance of structural-level intervention components to reduce intersectional stigma.

Presence of Content Appealing to Youth on Cannabis-Infused Edibles Packaging.

BACKGROUND: There is a lack of consistent regulation of cannabis edibles packaging to restrict youth-appealing content in the United States. OBJECTIVE: To describe content appealing to youth on U.S. cannabis-infused edibles packaging. METHODS: We analyzed 256 photos of cannabis-infused edibles packaging collected from U.S. adults from 25 states, District of Columbia, and Puerto Rico between May 2020 to August 2021. We coded the presence of product knockoffs, human and non-human creatures, images indicating flavor, text indicating flavor, and the number of colors. We compared these codes across states' legalization status (medical and non-medical cannabis, medical cannabis only, or limited cannabis legalization). RESULTS: Overall, 15% of packages resembled product knockoffs, 23% contained human/non-human creatures, 35% contained flavor images, 91% contained flavor text, and median number of colors was 5 (range from 1 to 10+). Packages purchased in states with medical and non-medical cannabis, medical cannabis only, or limited cannabis legalization differed significantly on product knockoffs (11%, 26%, 38%, p = 0.007), human/non-human creatures (19%, 33%, 63%, p = 0.002), flavor text (93%, 81%, 100%, p = 0.046), and number of colors (median of 5, 5, and 10, p = 0.022). CONCLUSIONS: Existing laws have not adequately limited content appealing to youth on U.S. cannabis-infused edibles packaging. Robust and consistent regulations in the U.S. are needed to ensure that the packaging of such products does not contain content that appeal to youth and lead to initiation or inadvertent ingestion.

Psychometric Validation of a Scale to Assess Culturally-Salient Aspects of HIV Stigma Among Women Living with HIV in Botswana: Engaging "What Matters Most" to Resist Stigma.

Perceived stigma deters engagement in HIV care and is powerfully shaped by culture. Yet few stigma measures consider how cultural capabilities that signify "full personhood" could be engaged to resist stigma. By applying a theory conceptualizing how culturally-salient mechanisms can worsen or mitigate HIV stigma in relation to "what matters most" (WMM), we developed the WMM Cultural Stigma Scale for Women Living with HIV in Botswana (WMM-WLHIV-BW) and psychometrically evaluated it among 201 respondents with known and unknown HIV status. The two subscales, Cultural Factors Shape Stigma (CFSS) and Cultural Capabilities Protect against Stigma (CCPS) were reliable (both [Formula: see text]). Among WLHIV, the CFSS Subscale showed initial construct validity with depressive symptoms (r = .39, p = .005), similar to an established HIV stigma scale, whereas the CCPS Subscale showed initial construct validity with self-esteem (r = .32, p = .026) and social support number (r = .29, p = .047), suggesting that achieving local cultural capabilities mitigates stigma and is linked with positive psychosocial outcomes. This culturally-derived scale could help WLHIV in Botswana experience improved stigma-related outcomes.

RESUMEN: El estigma percibido detetiza la participación en la atención de VIH y está fuertemente moldeado por la cultura. Sin embargo, pocas medidas de estigma consideran cómo las capacidades culturales que significan "personalidad plena" podrían ser utilizadas para resistir el estigma. Mediante la aplicación de una teoría que conceptualiza cómo los mecanismos culturalmente destacados pueden empeorar o mitigar el estigma del VIH en relación con "lo que más importa" (WMM), desarrollamos la Escala de Estigma Cultural WMM para mujeres que viven con VIH en Botswana (WMM-WLHIV-BW) y lo evaluamos psicométricamente entre 201 encuestados con estatus de VIH conocido y desconocido. Las dos subescalas, Factores Culturales dan Forma al Estigma (CFSS) y la protección de las Capacidades Culturales contra el Estigma (CCPS) eran fiables (ambos α = 0.90). Entre WLHIV, la subescala CFSS mostró la validez inicial de la construcción con síntomas depresivos (r = .39, p =.005), similar a una escala establecida de estigma del VIH, mientras que la subescala CCPS mostró la validez de la construcción inicial con autoestima (r = .32, p = .026) y el numero de apoyo social (r = .29, p = .047), lo que sugiere que lograr capacidades culturales locales mitiga el estigma y esta asociado con resultados psicosociales positivos. Esta escala culturalmente derivada podría ayudar a WLHIV en Bostwana a mejorar los resultados relacionados con el estigma.

Comparing models of delivery for cancer genetics services among patients receiving primary care who meet criteria for genetic evaluation in two healthcare systems: BRIDGE randomized controlled trial.

BACKGROUND: Advances in genetics and sequencing technologies are enabling the identification of more individuals with inherited cancer susceptibility who could benefit from tailored screening and prevention recommendations. While cancer family history information is used in primary care settings to identify unaffected patients who could benefit from a cancer genetics evaluation, this information is underutilized. System-level population health management strategies are needed to assist health care systems in identifying patients who may benefit from genetic services. In addition, because of the limited number of trained genetics specialists and increasing patient volume, the development of innovative and sustainable approaches to delivering cancer genetic services is essential. METHODS: We are conducting a randomized controlled trial, entitled Broadening the Reach, Impact, and Delivery of Genetic Services (BRIDGE), to address these needs. The trial is comparing uptake of genetic counseling, uptake of genetic testing, and patient adherence to management recommendations for automated, patient-directed versus enhanced standard of care cancer genetics services delivery models. An algorithm-based system that utilizes structured cancer family history data available in the electronic health record (EHR) is used to identify unaffected patients who receive primary care at the study sites and meet current guidelines for cancer genetic testing. We are enrolling eligible patients at two healthcare systems (University of Utah Health and New York University Langone Health) through outreach to a randomly selected sample of 2780 eligible patients in the two sites, with 1:1 randomization to the genetic services delivery arms within sites. Study outcomes are assessed through genetics clinic records, EHR, and two follow-up questionnaires at 4 weeks and 12 months after last genetic counseling contactpre-test genetic counseling. DISCUSSION: BRIDGE is being conducted in two healthcare systems with different clinical structures and patient populations. Innovative aspects of the trial include a randomized comparison of a chatbot-based genetic services delivery model to standard of care, as well as identification of at-risk individuals through a sustainable EHR-based system. The findings from the BRIDGE trial will advance the state of the science in identification of unaffected patients with inherited cancer susceptibility and delivery of genetic services to those patients. TRIAL REGISTRATION: BRIDGE is registered as NCT03985852 . The trial was registered on June 6, 2019 at clinicaltrials.gov .

Racial Discrimination, Sexual Partner Race/Ethnicity, and Depressive Symptoms Among Black Sexual Minority Men.

Although racial sexual exclusivity among Black gay, bisexual, and other sexual minority men (SMM) is frequently framed as a cause of HIV inequities, little research has examined how these sexual relationships may be driven by and protective against racism. This study examined associations between general racial discrimination, Black sexual exclusivity, sexual racial discrimination, and depressive symptoms among Black SMM. We conducted analyses on cross-sectional self-report data from 312 cisgender Black SMM in the U.S. Deep South who participated in the MARI study. Measures included general racial and sexual identity discrimination, race/ethnicity of sexual partners, sexual racial discrimination, and depressive symptoms. We estimated a moderated-mediation model with associations from discrimination to Black sexual exclusivity, moderated by discrimination target, from Black sexual exclusivity to sexual racial discrimination, and from sexual racial discrimination to depressive symptoms. We tested an indirect effect from racial discrimination to depressive symptoms to examine whether Black sexual exclusivity functioned as an intervening variable in the associations between racial discrimination and depressive symptoms. Results indicated that participants who experienced racial discrimination were more likely to exclusively have sex with Black men. Men with higher Black sexual exclusivity were less likely to experience sexual racial discrimination and, in turn, reported lower depressive symptoms. The indirect pathway from racial discrimination to depressive symptoms through Black sexual exclusivity and sexual racial discrimination was significant. Our results suggest that one of the drivers of sexual exclusivity among Black SMM may be that it helps to protect against the caustic psychological effects of racial discrimination.

Relationships of health information orientation and cancer history on preferences for consent and control over biospecimens in a biobank: A race-stratified analysis.

In this study, we investigated how patients' self-reported health information efficacy, relationship with health providers, and cancer history are associated with their preferences for informed consent and need for control over biobank biospecimens. We recruited 358 women aged 40 and older (56% African American; 44% European American) and analyzed the data using multivariable regression models. Results show that African American participants' health information efficacy was significantly and negatively associated with their need for control over biospecimens and preference for a study-specific model. European American participants' dependency on doctors was a significant and negative predictor of their preference for a study-specific model. Several significant interaction effects, which varied across races, were found with regard to health information efficacy, personal cancer history, need for control, and preference for a study-specific model. The study findings suggest it is important to consider health information efficacy, relationship with providers, and need for control when developing large diverse biobanks.

Relationships of Family History-related Factors and Causal Beliefs to Cancer Risk Perception and Mammography Screening Adherence Among Medically Underserved Women.

This study examines how family history-related factors and causal beliefs affect underserved women's cancer risk perceptions and adherence to mammography. 1,010 patients at a primary care safety net clinic at a large urban hospital completed a survey in 2015. Of the 1,010 patients, 467 women 45 years of age or older were included in this analysis. The majority of participants were African American (68%). We built multivariable linear and logistic regression models to examine the dependent variables of cancer risk perception and mammography screening adherence. According to the results, those with a family history of cancer were significantly more likely to be adherent to mammography. Perceived importance of family health history also significantly predicted their mammography screening adherence. However, cancer risk perceptions did not predict underserved women's mammography adherence. Significant interaction effects on the associations 1) between family cancer history, cancer risk perceptions, and mammography screening adherence and 2) between race, behavioral causal beliefs, and risk perceptions were found. Findings suggest that implementing different strategies across racial groups and by cancer history may be necessary to promote regular mammography screening.

Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for Biobanks.

This study investigates how patients' privacy concerns about research uses of biospecimen and trust in doctors are associated with their preferences for informed consent and need for control over biospecimens in a biobank. Particularly, this study focuses on the perspectives of Communication Privacy Management theory, precision medicine, and racial health disparities. We recruited 358 women aged 40 and older stratified by race (56% African American and 44% European American). Multivariable linear regression models examined hypothesis and research questions. Individuals' privacy concerns and trust in doctors were significantly associated with their need for control. Although participants' privacy concerns were positively associated with their preference for study-specific model, trust in doctors had no effect on the preference. African American participants needed more control over their sample and were more likely to prefer study-specific model compared to European American participants. Significant interactions by race on the associations between trust and need for control and between privacy concerns and preference for study-specific model were found. These findings suggest that when developing large diverse biobanks for future studies it is important to consider privacy concerns, trust, and need for control with an understanding that there are differences in preferences by race.

Factors affecting breast cancer patients' need for genetic risk information: From information insufficiency to information need.

Information-seeking models typically focus on information-seeking behaviors based on individuals' interest in information, because their current level is perceived to be insufficient. In the context of genetic risk information (GRI), however, information insufficiency is difficult to measure and thus can limit understanding of information behavior in the context of GRI. We propose that an individual's need for information might be a more direct and conceptually clearer alternative to predicting their information-seeking behavior. To test this hypothesis, this study investigates the extent to which previously identified factors affecting interest in GRI are also predictors of need for GRI among women diagnosed with breast cancer at the age of 40 or younger (N = 1,069). As hypothesized, there was a positive association between interest in and need for GRI. Furthermore, hypothesized factors of numeracy, information orientation, and genetic knowledge were significant predictors of increased interest in and need for GRI. In contrast, hypothesized factors of genetic worry and genetic causal belief predicted increased interest in GRI only, while genetic self-efficacy predicted increased need for GRI only. As hypothesized, BRCA status significantly moderated associations between informational norm and both interest in and need for GRI. Collectively, the findings support inclusion of need for GRI in theoretical information-seeking models in the context of genomic risk.

Content validation of a quantitative stakeholder engagement measure.

AIM: Using a stakeholder-engaged approach, this study conducted content validation and item reduction of a quantitative measure of research engagement. METHODS: A five-round modified Delphi process was used to reach consensus on items. Rounds 1-3 and 5 were conducted using web-based surveys. Round 4 consisted of a 2-day, in-person meeting. Delphi panelists received individualized reports outlining individual and aggregate group responses after rounds 1-3. RESULTS: Over the five-round process, items were added, dropped, modified, and moved from one engagement principle to another. The number of items was reduced from 48 to 32, with three to five items corresponding to eight engagement principles. CONCLUSIONS: Research that develops standardized, reliable, and accurate measures to assess stakeholder engagement is essential to understanding the impact of engagement on scientific discovery and the scientific process. Valid quantitative measures to assess stakeholder engagement in research are necessary to assess associations between engagement and research outcomes.