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This research was supported by a grant from the National Human Genome Research Institute of the National Institutes of Health (R01HG010679). This project was conducted as part of the multi-aim R01 and led by Charles Lee and J. Scott Roberts. The project explores stakeholders' perspectives on key characteristics for implementation of workplace genetic testing (wGT).

The project had three specific aims and a supplementary aim:

• Aim 1: Examine employers' perspectives through a landscape analysis to ascertain the prevalence and distribution of wGT among US companies
• Aim 2: Investigate employees' views and perceptions of the benefits, risks, and limitations of wGT through (a) a national survey of working adults and (b) a survey of individuals working at a large US healthcare system who were offered wGT by their employer
• Aim 3: Conduct a modified Delphi process with multiple surveys and a deliberative workshop among key stakeholders and distill the finding of Aims 1 and 2 to inform a normative assessment of wGT.
• Supplement: Examine genetic counselors' perspectives on and experiences with wGT using semi-structured interviews and a national survey

This study, led by Co-Principal Investigator J. Scott Roberts and Co-Investigator Wendy Uhlmann, examined Aim 2 and the employee perspectives towards workplace genetic testing.

This research was supported by a grant from the National Human Genome Research Institute of the National Institutes of Health (R01HG010679). This project was conducted as part of the multi-aim R01 and led by Charles Lee and J. Scott Roberts. The project explores stakeholders' perspectives on key characteristics for implementation of workplace genetic testing (wGT).

The project had three specific aims and a supplementary aim:

• Aim 1: Examine employers' perspectives through a landscape analysis to ascertain the prevalence and distribution of wGT among US companies
• Aim 2: Investigate employees' views and perceptions of the benefits, risks, and limitations of wGT through (a) a national survey of working adults and (b) a survey of individuals working at a large US healthcare system who were offered wGT by their employer
• Aim 3: Conduct a modified Delphi process with multiple surveys and a deliberative workshop among key stakeholders and distill the finding of Aims 1 and 2 to inform a normative assessment of wGT.
• Supplement: Examine genetic counselors' perspectives on and experiences with wGT using semi-structured interviews and a national survey

This study, led by Wendy Uhlmann, examined the supplementary aim.

This research was supported by a grant from the National Human Genome Research Institute of the National Institutes of Health (R01HG010679). This project was conducted as part of the multi-aim R01 and led by Charles Lee and J. Scott Roberts. The project explores stakeholders' perspectives on key characteristics for implementation of workplace genetic testing (wGT).

The project had three specific aims and a supplementary aim:

• Aim 1: Examine employers' perspectives through a landscape analysis to ascertain the prevalence and distribution of wGT among US companies
• Aim 2: Investigate employees' views and perceptions of the benefits, risks, and limitations of wGT through (a) a national survey of working adults and (b) a survey of individuals working at a large US healthcare system who were offered wGT by their employer
• Aim 3: Conduct a modified Delphi process with multiple surveys and a deliberative workshop among key stakeholders and distill the finding of Aims 1 and 2 to inform a normative assessment of wGT.
• Supplement: Examine genetic counselors' perspectives on and experiences with wGT using semi-structured interviews and a national survey

This study, led by Co-Investigators Greg Feero and Anya E.R. Prince, examined Aim 3.

This study is designed to address the ongoing need to create forensically relevant linkages between persons, places, and objects by developing the untapped potential of the human viral microbiome (virome). The human virome is a source of rich genetic diversity that needs to be examined to determine if it is stable, transferable, and provides a sufficient power of discrimination to be used as an alternative to traditional human forensic deoxyribonucleic acid (DNA) tests when such tests are infeasible. The human bacterial microbiome is already being examined as an alternative method for human identification in forensically relevant cases. The human virome offers some advantages as the viral genomes are even smaller than those of bacteria, and thus are potentially more physically stable, have a variety of morphologies (double- and single-stranded) increasing the possible number of discriminating markers, and is present throughout the human body, including the skin and body fluids, making it transferable.

This research was supported by a grant from the National Human Genome Research Institute of the National Institutes of Health (R01HG010679). This project was conducted as part of the multi-aim R01 and led by Charles Lee and J. Scott Roberts. The project explores stakeholders' perspectives on key characteristics for implementation of workplace genetic testing (wGT).

The project had three specific aims and a supplementary aim:

• Aim 1: Examine employers' perspectives through a landscape analysis to ascertain the prevalence and distribution of wGT among US companies
• Aim 2: Investigate employees' views and perceptions of the benefits, risks, and limitations of wGT through (a) a national survey of working adults and (b) a survey of individuals working at a large US healthcare system who were offered wGT by their employer
• Aim 3: Conduct a modified Delphi process with multiple surveys and a deliberative workshop among key stakeholders and distill the finding of Aims 1 and 2 to inform a normative assessment of wGT.
• Supplement: Examine genetic counselors' perspectives on and experiences with wGT using semi-structured interviews and a national survey

This study, led by Co-Investigators Debra Mathews and Kayte Spector-Bagdady, examined Aim 1 and the employer perspectives towards workplace genetic testing.

To diagnose rare genetic conditions, doctors look at patients' genetic data and a phenotypic profile. A phenotypic profile is a record of all the physical traits of a condition. It uses a list of standard terms called Human Phenotype Ontology, or HPO. Doctors and clinic staff do a thorough exam with the patient to create the profile. The exam takes a long time and often more than one visit.

Patients may be able to create phenotypic profiles themselves using surveys. These surveys may take less time than clinic visits. But it is unclear whether patient surveys can provide enough details to correctly identify conditions.

In this project, the research team tested two surveys:

• Phenotypr. This survey asks patients to describe their symptoms and then matches the descriptions to plain language HPO or clinical HPO terms.
• GenomeConnect. This survey uses multiple choice questions to asks patients about their health and symptoms.

The Vietnam Era Twin Study of Aging (VETSA) projects began in 2002 with the goal of understanding risk and protective factors, including genetics, for cognitive and brain aging starting in midlife. This NIH funded longitudinal study has completed three waves of data collection (2002-2008; 2008-2014, 2015-2020) following the same group of non-patient, community dwelling male veteran twins from when they were average age 56 to average age 68. A fourth wave of data collection began in October 2021. Although the men are American veterans, this is not a VA sample. This is a nation-wide sample with participants flown into sister data collection sites at either University of California San Diego or Boston University.

The VETSA study encompasses multiple linked grants and data collections with two studies funded continuously since 2002--The VETSA Longitudinal Twin Study of Cognition and Aging and The VETSA Longitudinal MRI Twin Study of Aging. Because of the broad interests of the investigators, while study data focus most heavily on in-person cognitive testing, a wide array of psychosocial, demographic, medical history, physical functioning, and personality measures were also collected. While some measures were only collected at baseline, the majority are repeated at every data collection.

At each wave of data collection, participants completed a lengthy psychosocial questionnaire at home then came to the testing site for a full day (~8 hrs) of in-person testing. Participants were housed for either 2 nights if only part of VETSA aging or 3 nights if they qualified for the MRI data collection.

The Broadening the Reach, Impact, and Delivery of Genetic Services (BRIDGE) randomized controlled trial included 3,073 eligible patients between 2020-2023. The trial examined whether chatbot and standard of care approaches are equivalent in completion of pre-test cancer genetic services and genetic testing.

Since 2013, the Robert Wood Johnson Foundation (RWJF) has led the development of a pioneering national action framework to advance a "culture that enables all in our diverse society to lead healthier lives now and for generations to come." Accomplishing these principles requires a national paradigm shift from a traditionally disease and health care-centric view of health toward one that focuses on well-being. Recognizing that paradigm shifts require intentional actions, RWJF worked with RAND researchers to design an actionable path to fulfill the Culture of Health (CoH) vision. A central piece of this work is the development of measures to assess constructs underlying a CoH.

The National Survey of Health Attitudes (NSHA) is a survey that RWJF and RAND analysts developed and conducted as part of the foundation's CoH strategic framework. The foundation undertook this survey to measure key constructs that could not be measured in other data sources. Thus, the survey was not meant to capture the full action framework that informs CoH, but rather just selected measure areas. The questions in this survey primarily addressed the action area: making health a shared value. The survey covers a variety of topics, including views regarding what factors influence health, such as the notion of health interdependence (peer, family, neighborhood, and workplace drivers of health), values related to national and community investment for health and well-being; behaviors around health and well-being, including civic engagement on behalf of health, and the role of community engagement and sense of community in relation to health attitudes and values.

This study includes the results from the 2023 RWJF National Survey of Health Attitudes. The 2023 survey is the third wave of the NSHA. The first wave was conducted in 2015 (ICPSR 37405) and the second wave in 2018 (ICPSR 37633). The 2023 report complements the overview of the 2015 survey described in the RAND report Development of the Robert Wood Johnson Foundation National Survey of Health Attitudes (Carman et al., 2016), and its subsequent topline 2018 Survey of National Health Attitudes: Description and Top-Line Summary (Carman et al., 2019) and is organized similarly for consistency. A companion set of longitudinal surveys during the COVID-19 pandemic was fielded between 2020 and 2021 and is further described in four top-line reports, COVID-19 and the Experiences of Populations at Greater Risk (Carman et al., 2020-2021).

The questions in the 2023 survey uniquely capture aspects of American mindset about health, health equity, structural racism, and wellbeing in ways that are not present in other surveys. This version of the NSHA can be viewed in three main sections: (1) individual health experiences, perspectives, and knowledge (making health a shared value); (2) health equity perspectives; and (3) community wellbeing, including climate views and barriers to community engagement. Insights from the surveys referenced above, including this one, have established a baseline and set of cross-sectional pulse checks on where the American public is regarding their recognition of social determinants of health, their understanding of health inequities including structural racism, their willingness to address those inequities and their indication of who in society should be responsible for solving health inequities.

Beginning in March 1994, the San Francisco Men's Health Study was merged with the San Francisco General Hospital Cohort Study to form the United Men's Health Study. Data collection activities in this phase of the project are restricted to basic surveillance of men known to be HIV-positive. There were 7 waves of data collection between 1994 and 2002. Wave 1 of the UMHS (Surveillance) consisted of 272 cases, interviewed between March and October 1994.

All men known to be HIV positive were contacted by the Survey Research Center. The non-progressors, seroconverters, and a group of controls were invited to come to a clinic to be interviewed, given a physical exam, and asked to provide a blood specimen. Other men who were HIV-positive but did not fall into this group were asked to complete an interview over the telephone. The major focus of these activities are to detect the presence (or absence) of disease progressors among these men.

Please note the attrition rate across the study waves. Attrition may be related to non-response and/or the death of participants. Given the merging of the two studies, and the non-longitudinal structure of these data, response rate was difficult to determine from the available datasets. The Follow-Up file reports the survival status of the participants as of the end of the study, 1 March 2002.

In addition to the main waves of the study, there was a Host Genetics Substudy. The 231 participants in Wave 2 of this United Men's Health Study and 37 additional participants from the Host Genetics Substudy of the San Francisco Men's Health Study were in this substudy. About 30 of the questions were not administered to the 37 additional participants.

Since 2013, the Robert Wood Johnson Foundation (RWJF) has led the development of a pioneering national action framework to advance a "culture that enables all in our diverse society to lead healthier lives now and for generations to come." Accomplishing these principles requires a national paradigm shift from a traditionally disease and health care-centric view of health toward one that focuses on well-being. Recognizing that paradigm shifts require intentional actions, RWJF worked with RAND researchers to design an actionable path to fulfill the Culture of Health (CoH) vision. A central piece of this work is the development of measures to assess constructs underlying a CoH.

The National Survey of Health Attitudes is a survey that RWJF and RAND analysts developed and conducted as part of the foundation's CoH strategic framework. The foundation undertook this survey to measure key constructs that could not be measured in other data sources. Thus, the survey was not meant to capture the full action framework that informs CoH, but rather just selected measure areas. The questions in this survey primarily addressed the action area: making health a shared value. The survey covers a variety of topics, including views regarding what factors influence health, such as the notion of health interdependence (peer, family, neighborhood, and workplace drivers of health), values related to national and community investment for health and well-being; behaviors around health and well-being, including civic engagement on behalf of health, and the role of community engagement and sense of community in relation to health attitudes and values.

This study includes the results from the 2018 RWJF National Survey of Health Attitudes. This 2018 survey is considered the second wave, the first wave of the survey was conducted in 2015 (ICPSR 37405). In 2018, the study team fielded an updated version that included many of the same questions but added some new constructs that were of interest as part of the larger Culture of Health effort. This study complements the overview of the 2015 survey described in the RAND report Development of the Robert Wood Johnson Foundation National Survey of Health Attitudes (Carman et al., 2016).

Since 2013, the Robert Wood Johnson Foundation (RWJF) has led the development of a pioneering national action framework to advance a "culture that enables all in our diverse society to lead healthier lives now and for generations to come." Accomplishing these principles requires a national paradigm shift from a traditionally disease and health care-centric view of health toward one that focuses on well-being. Recognizing that paradigm shifts require intentional actions, RWJF worked with RAND researchers to design an actionable path to fulfill the Culture of Health (CoH) vision. A central piece of this work is the development of measures to assess constructs underlying a CoH.

The National Survey of Health Attitudes is a survey that RWJF and RAND analysts developed and conducted as part of the foundation's CoH strategic framework. The foundation undertook this survey to measure key constructs that could not be measured in other data sources. Thus, the survey was not meant to capture the full action framework that informs CoH, but rather just selected measure areas. The questions in this survey primarily addressed the action area: making health a shared value. The survey covers a variety of topics, including views regarding what factors influence health, such as the notion of health interdependence (peer, family, neighborhood, and workplace drivers of health), values related to national and community investment for health and well-being; behaviors around health and well-being, including civic engagement on behalf of health, and the role of community engagement and sense of community in relation to health attitudes and values.

The MIDUS Refresher Daily Diary Project (aka National Study of Daily Experiences or NSDE) contains data from 782 respondents. The purpose of the Daily Stress Project was to examine how sociodemographic factors, health status, personality characteristics, and genetic endowment modify patterns of change in exposure to day-to-day life stressors as well as physical and emotional reactivity to these stressors.

The primary aims were:

1. To describe how the links between multiple aspects of daily stressors (e.g., frequency, content, severity) and daily physical and emotional well-being change over ten years during adulthood;
2. To examine how sociodemographic factors and personality characteristics influence change in both exposure to as well as changes in physical and emotional reactivity to daily stressors;
3. To investigate how exposure and reactivity to daily stressors correlate with physiological indicators of physical health and predict changes in global health reports; and
4. To explore the relative genetic and environmental influences mediating change in exposure and physical and emotional reactivity to daily stressors throughout adulthood.

The Daily Diary study is comprised of a subsample of the MIDUS (Midlife in the United States) Refresher, a national survey of nearly 3,600 Americans (aged 25 to 75) conducted during 2011-2014. The MIDUS Refresher survey was designed to replenish the original MIDUS 1 baseline cohort and allow the examination of period effects on health (mental and physical) related to the economic recession by comparing the pre-recession MIDUS 1 sample with the post-recession MIDUS Refresher sample. Guiding hypotheses, at the most general level, were that behavioral and psychosocial factors are consequential for health (physical and mental).

Demographic variables in this collection include sex and age.

The Iowa Adoption Studies were conducted between 1975 and 2008. The group of studies consist of 5 independent waves of data collection each of which examined genetic (biological) and environmental influences on psychopathology. The adoption paradigm allowed separation of genetic and environmental influences on behavior, as well as joint influences due to gene x environment interaction. Adoptees were interviewed about lifetime psychopathology including substance abuse and dependence, antisocial personality, and mood disorders. A follow-up study was conducted from 2000-2004 that recruited all previous participants and natural offspring of the adoptive parents when available. Standardized psychiatric assessments were administered along with measures of personality disorders and traits, retrospective reports on childhood experiences with adoptive parents, and current symptomatology. An extensive neurocognitive assessment was conducted on a subset of participants who had standardized school achievement scores. The goal of this last wave of assessment was to evaluate the influence of substance use on mid-life cognition and health.

The respondents were assessed using a number of different surveys over the study period. The following describes the notable variables as well as descriptions of the surveys included in the dataset.

The first variables in the dataset identify sibling pairs and provides data on whether the respondents' biological parents suffered from mental health or substance abuse issues. Next birth records are provided that give basic information about the health of the person when he or she was born. This information is followed by the survey results of "The Schedule for Nonadaptive and Adaptive Personality" (SNAP) as well as variables that reflect the diagnosis of personality disorders and nonadaptive personality traits based on the SNAP survey responses.

The next section includes responses from "The Iowa Personality Disorder Screen," a quick personality disorder screen developed in 1999 intended for use in clinical and research settings.

Next, responses to Pearson Assessments "Brief symptoms inventory" are included as well as the scores calculated based on these survey responses. The results of this survey assess the mental state of the patient including scales on Somatization, Obsessive-Compulsive, Interpersonal Sensitivity, Depression, Anxiety, Hostility, Phobic Anxiety, Paranoid Ideation and Psychoticism.

The respondents also completed the "Buss-Durkee Hostility Questionnaire" and were assessed on measure regarding the following hostility traits: negativism, resentment, indirect hostility, assault, suspicion, irritability and verbal hostility.

Reponses to the "The Social Provisions Scale" survey are also included. The purpose of this survey is to assess the relationship the respondents have to other people. The 6 social provisions assessed include: guidance, reliable alliance, reassurance of worth, attachment, social integration, and opportunity for nurturance.

"The Parental Bonding Instrument" instrument was utilized to assess the respondents' relationships to their mothers and fathers.

A series of cognitive tests were administered to respondents. ICPSR is unable to provide the survey instruments used in the cognitive test due to copy write issues. These tests include:

Controlled Oral Word Association Test (COWAT)

North American Adult Reading Test (NAART)

Rey Figure and Rey Complex Figure Test and Recognition Trial (RCFT)

Shipley Institute of Living Scale (SILS)

Stroop Color and Word Test (SCWT)

Tower of Hanoi (TofH)

Comprehensive Trailmaking Test (CTMT)

Weschler Adult Intelligence Test (WAIS)

Weschler Memory Test (WMS)

The dataset also includes respondents' results of the Comprehensive Performance Test (CPT) and the Iowa Gambling Task (IGT)

Scores from the "Iowa Test of Basic Skills," a test of academic achievement that evaluates students knowledge in subjects including, mathematics, reading comprehension, and science, are included in the dataset. Respondents are evaluated in grades 4, 8 and 11.

The final section of the dataset includes two waves of the "Semi Structured Assessment for the Genetics of Alcoholism," a survey intended to assess the physical, psychological, and social manifestations of alcohol abuse. These survey responses make up the bulk of the dataset and include variables on a variety of topics including: demographics, medical history, substance use, eating disorders, depression, dysthymia, mania, ASP, suicide, PTSD, generalized anxiety disorder, OCD, social phobia, agoraphobia, panic disorder, home environment, gambling, and ADHD. Substances use investigated includes alcohol, tobacco, marijuana, sedatives, stimulants, cocaine, opiates, solvents, hallucinogens, and other drugs.

This dataset includes 934 cases and 9,370 variables.

The database of Genotypes and Phenotypes (dbGaP) was developed to archive and distribute the results of studies that have investigated the interaction of genotype and phenotype. Such studies include genome-wide association studies, medical sequencing, molecular diagnostic assays, as well as association between genotype and non-clinical traits. The advent of high-throughput, cost-effective methods for genotyping and sequencing has provided powerful tools that allow for the generation of the massive amount of genotypic data required to make these analyses possible.

dbGaP provides two levels of access - open and controlled - in order to allow broad release of non-sensitive data, while providing oversight and investigator accountability for sensitive data sets involving personal health information. Summaries of studies and the contents of measured variables as well as original study document text are generally available to the public, while access to individual-level data including phenotypic data tables and genotypes require varying levels of authorization.

The NIDA Genetics Consortium was created in 1999 and has several overarching missions: (1) identify human chromosomal regions containing genes and/or specific genes that confer susceptibility to drug addiction; (2) create a repository for data (i.e., clinical information and biospecimens containing DNA; (3) generate a database on molecular genetics of drug use disorders and related phenotypes to provide controlled access to collaborative studies with the broader scientific community; and (4) establish a consortium of scientists who meet regularly and collaborate on projects.

Along with the description of the NIDA Genetics Consortium, the Web site outlines policies for access and distribution of DNA and clinical data from NIDA-funded studies on the genetics of addiction vulnerability.