Optimistic predictions that genetic and genomic testing will provide health benefits have been tempered by the concern that individuals who receive their results may experience negative psychosocial outcomes. This potential ethical and clinical concern has prompted extensive conversations between policy-makers, health researchers, ethicists, and the general public. Fortunately, the psychosocial consequences of such testing are subject to empirical investigation, and over the past quarter century, research that clarifies some of the types, likelihood, and severity of potential harms from learning the results of the testing has accumulated. I aim to provide an overview of the findings of this research by looking at selected systematic reviews. This will convey the gist of the literature's quality and coverage, reveal gaps in existing knowledge, and highlight promising areas for future scholarship.

Objectives As whole genome sequencing (WGS) becomes increasingly available, clinicians will be faced with conveying complex information to individuals at different stages in life. The purpose of this study is to characterize the views of young adults toward obtaining WGS, learning different types of genomic information, and having choice about which results are disclosed. Methods A mixed-methods descriptive study was conducted with a diverse group of 18 and 19-years-olds (N = 145). Participants watched an informational video about WGS and then completed an online survey. Results Participants held a positive attitude toward obtaining WGS and learning about a range of health conditions and traits. Increased interest in learning WGS information was significantly associated with anticipated capacity to handle the emotional consequences if a serious risk was found (β = 0.13, P = .04). Young adults wanted the ability to choose what types of genomic risk information would be returned and expressed decreased willingness to undergo WGS if clinicians made these decisions (t(138) = -7.14, P <.01). Qualitative analysis showed that young adults emphasized procedural factors in WGS decision-making and that perceived health benefits of WGS had a substantial role in testing preferences and anticipated usage of WGS results. Conclusions Clinicians are likely to encounter enthusiasm for obtaining WGS results among young adults and may need to develop strategies for ensuring that this preference is adequately informed.

Introduction. Movies can be used in public health pedagogy to illustrate concepts and build students’ connection to the material. This study describes the perspectives of undergraduates and faculty on effective strategies for using movies to achieve key public health learning outcomes. Method. In this cross-sectional study, a survey was administered to undergraduate majors in health studies ( n = 109) and faculty who teach health-related courses ( n = 27). The survey included measures of usage and attitudes toward pedagogical applications of movies, which were informed by Bloom’s Taxonomy and the Core Competencies for Public Health Professionals. Results. Students and faculty expressed favorable attitudes toward the use of movies in undergraduate public health education. Additionally, both groups endorsed the usefulness of movies for affective and cognitive learning outcomes, with appraisals of affective learning being significantly higher. Movies were most frequently applied to building the core public health competencies of analyzing public health issues, communicating effectively, relationship building, and cultural competency. Among students, 74% stated that watching health-related movies reinforced their current career trajectory, encouraged them to consider other careers, or changed their choice of career. Discussion. Preparation of the future public health workforce requires students to develop both cognitive skills and an emotional connection to efforts that address health-related challenges. The findings of this study indicate that movies support both types of learning outcomes and therefore deserve further investigation as pedagogical tool in population health instruction.

Aim: To characterize the views of young adults toward integrating whole-genome sequencing (WGS) into standard pediatric care, particularly when used as a supplement to newborn screening. Materials & methods: This mixed methods descriptive study assessed the perspectives of a diverse group of 18-and 19-year olds (n = 145) in the USA using an informational video and online survey. Results: Young adults typically recommended disclosing WGS results to both parents and children during childhood. In the qualitative analysis, most participants emphasized the anticipated health benefits of pediatric WGS, while a minority discussed possible negative emotional and developmental impacts. Conclusion: Differing preferences for pediatric WGS emphasize the importance that clinicians adopt responsive approaches when providing WGS and disclosing results to families.

BACKGROUND:The aim of the current study was to learn how people integrate attitudes about multiple health conditions to make a decision about genetic testing uptake.METHODS:This study recruited 294 healthy young adults from a parent research project, the Multiplex Initiative, conducted in a large health care system in Detroit, Michigan. All participants were offered a multiplex genetic test that assessed risk for 8 common health conditions (e.g., type 2 diabetes). Data were collected from a baseline survey, a web-based survey, and at the time of testing.RESULTS:Averaging attitudes across diseases predicted test uptake but did not contribute beyond peak attitudes, the highest attitude toward testing for a single disease in the set. Peak attitudes were found sufficient to predict test uptake.LIMITATIONS:The effects of set size and mode of presentation could not be examined because these factors were constant in the multiplex test offered.CONCLUSIONS:These findings support theories suggesting that people use representative evaluations in attitude formation. The implication of these findings for further developments in genetic testing is that the communication and impact of multiplex testing may need to be considered in the light of a bias toward peak attitudes.

Whole-genome sequencing (WGS) has advanced to a point where it is beginning to be integrated into pediatric practice. With little consensus on how to maximize the benefits of WGS for children, there is a growing need for focused efforts that connect researchers, clinicians, and families to chart a path forward. To illustrate relevant concerns, two contrasting applications of pediatric WGS are explored: clinical use with children who have undiagnosed conditions, and population-based screening. Specific challenges for health care services, policy development, and the well-being of children are discussed in light of current research. In the interest of ensuring evidence-based pediatric WGS, strategies are identified for advancing our understanding of what it means for children to grow up with WGS results guiding their health care.

R. Adany, Debrecen, Hungary A. Aaro, Odense, Denmark D. Avard, Montréal, Qué., Canada I. Blancquaert, Montréal, Qué., Canada J.-J. Cassiman, Leuven, Belgium E.E. Castilla, Rio de Janeiro, Brazil S. Grosse, Atlanta, Ga., USA J. Harris, Nydalen, Norway A. Haslberger, Vienna, Austria D. Ibarreta, Sevilla, Spain M. Karmali, Toronto, Ont., Canada H. Lehrach, Berlin, Germany J. Little, Ottawa, Ont., Canada N. Malats, Madrid, Spain M.J. Martin-Moreno, Copenhagen, Denmark C. McBride, Bethesda, Md., USA S.A. Morré, Amsterdam, Th e Netherlands D. Niese, Basel, Switzerland Editors-in-Chief

Purpose: Examination of patients’ responses to direct-to-consumer genetic susceptibility tests is needed to inform clinical practice. This study examined patients’ recall and interpretation of, and responses to, genetic susceptibility test results provided directly by mail. Methods: This observational study had three prospective assessments (before testing, 10 days after receiving results, and 3 months later). Participants were 199 patients aged 25–40 years who received free genetic susceptibility testing for eight common health conditions. Results: More than 80% of the patients correctly recalled their results for the eight health conditions. Patients were unlikely to interpret genetic results as deterministic of health outcomes (mean = 6.0, s.d. = 0.8 on a scale of 1–7, 1 indicating strongly deterministic). In multivariate analysis, patients with the least deterministic interpretations were white ( P = 0.0098), more educated ( P = 0.0093), and least confused by results ( P = 0.001). Only 1% talked about their results with a provider. Conclusion: Findings suggest that most patients will correctly recall their results and will not interpret genetics as the sole cause of diseases. The subset of those confused by results could benefit from consultation with a health-care provider, which could emphasize that health habits currently are the best predictors of risk. Providers could leverage patients’ interest in genetic tests to encourage behavior changes to reduce disease risk. Genet Med advance online publication 5 April 2012

The relationships between worry and perceptions of likelihood and severity were evaluated across eight common diseases. Individual and disease variability in worry and perceptions were examined. 294 participants were recruited through the Multiplex Initiative, in which a genetic susceptibility test for eight common diseases was offered to healthy adults. Participants completed a baseline telephone survey and web-based surveys without a commitment to be tested, and then made a choice on testing. Between- and within-subjects analyses yielded the following main findings: (1) worry is more closely related to likelihood perceptions than to severity perceptions; (2) severity perceptions add significantly to explained worry variances above and beyond likelihood perceptions; (3) risk perceptions and worries form two clusters: cancer diseases and cardiovascular-metabolic diseases; and (4) variance in risk perception and worry is explained by a combination of between- and within-subjects variances. Risk perception research should attend to severity perceptions, within-subjects variability and inter-disease differences, and to strategies for grouping conditions.

Background. The aim of the current study was to learn how people integrate attitudes about multiple health conditions to make a decision about genetic testing uptake. Methods. This study recruited 294 healthy young adults from a parent research project, the Multiplex Initiative, conducted in a large health care system in Detroit, Michigan. All participants were offered a multiplex genetic test that assessed risk for 8 common health conditions (e.g., type 2 diabetes). Data were collected from a baseline survey, a web-based survey, and at the time of testing. Results. Averaging attitudes across diseases predicted test uptake but did not contribute beyond peak attitudes, the highest attitude toward testing for a single disease in the set. Peak attitudes were found sufficient to predict test uptake. Limitations. The effects of set size and mode of presentation could not be examined because these factors were constant in the multiplex test offered. Conclusions. These findings support theories suggesting that people use representative evaluations in attitude formation. The implication of these findings for further developments in genetic testing is that the communication and impact of multiplex testing may need to be considered in the light of a bias toward peak attitudes.

Disclosing Individual Genetic Results to Research Participants Vardit Ravitsky a & Benjamin S. Wilfond b c a National Institutes of Health and University of Pennsylvania b Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda c Department of Clinical Bioethics, The Clinical Center, National Institutes of Health and University of Washington

New genetic tests reveal risks for multiple conditions simultaneously, although little is understood about the psychological factors that affect testing uptake. We assessed a conceptual model called the multiplex genetic testing model (MGTM) using structural equation modelling. The MGTM delineates worry, perceived severity, perceived risk, response efficacy and attitudes towards testing as predictors of intentions and behaviour. Participants were 270 healthy insured adults aged 25-40 from the Multiplex Initiative conducted within a health care system in Detroit, MI, USA. Participants were offered a genetic test that assessed risk for eight common health conditions. Confirmatory factor analysis revealed that worry, perceived risk and severity clustered into two disease domains: cancer or metabolic conditions. Only perceived severity of metabolic conditions was correlated with general response efficacy (beta = 0.13, p < 0.05), which predicted general attitudes towards testing (beta = 0.24, p < 0.01). Consistent with our hypothesised model, attitudes towards testing were the strongest predictors of intentions to undergo testing (beta = 0.49, p < 0.01), which in turn predicted testing uptake (OR 17.7, beta = 0.97, p < 0.01). The MGTM explained a striking 48% of the variance in intentions and 94% of the variation in uptake. These findings support use of the MGTM to explain psychological predictors of testing for multiple health conditions.

Background: Few data exist to inform concerns raised by online direct-to-consumer marketing of genetic susceptibility tests, such as those offered by commercial entities like 23andme, Navigenics, and DNA Direct. The Multiplex Initiative, a population-based study of healthy adults, provides the first opportunity to evaluate how use of a Web-based decision tool that conveyed information about a genetic susceptibility test influenced individuals' test decisions. Objective: To inform the ongoing debate over whether individuals offered genetic susceptibility testing without the involvement of a health care provider (eg, through direct-to-consumer testing) can make informed decisions about testing when guided by online decision aids. Methods: Participants were 526 members of a large health maintenance organization aged 25 to 40 years old who visited a study website. Multivariate logistic regression models were tested to examine the association of website usage with downstream test decisions. Results: Participants viewed an average of 2.9 of the 4 pages introducing the multiplex test, 2.2 of the 8 pages describing the health conditions, and 3.2 of the 15 pages describing the genes. For each page viewed, participants were more likely to describe their decision-making as easy (odds ratio [OR] 1.04, 95% confidence interval [CI] 1.01-1.07) and to decide to be tested (OR 1.08, 95% CI 1.05-1.11). Conclusions: Healthy adults in this study perceived Web-based genomic information presented using evidence-based communications approaches to be helpful in supporting both decisions to test and not to test. Continued research is needed to ensure that these results generalize to target groups with lower literacy and less Internet savvy.

In this report, we describe the evolution and types of genetic information provided directly to consumers, discuss potential advantages and disadvantages of these products, and review research evaluating consumer responses to direct-to-consumer (DTC) genetic testing. The available evidence to date has focused on predictive tests and does not suggest that individuals, health care providers, or health care systems have been harmed by a DTC provision of genetic information. An understanding of consumer responses to susceptibility tests has lagged behind. The Multiplex Initiative is presented as a case study of research to understand consumers' responses to DTC susceptibility tests. Three priority areas are recommended for accelerated research activities to inform public policy regarding DTC genetic information: (a) exploring consumer's long-term responses to DTC genetic testing on a comprehensive set of outcomes, (b) evaluating optimal services to support decision making about genetic testing, and (c) evaluating best practices in promoting genetic competencies among health providers.

Purpose: As advances in research have made a growing number of genetic tests available, clinicians will increasingly be faced with making decisions about when offering genetic testing services to children is appropriate. A key factor in such decisions involves determining whether knowledge of genetic health risks might have an impact on children's psychosocial wellbeing.Methods: We conducted a systematic review of the literature using five online databases to identify studies that assessed the impact of communicating nondiagnostic carrier or presymptomatic genetic test results to children.Results: A total of 17 articles met the inclusion criteria for this review. These studies used a wide range of methodologies to explore carrier and predictive testing. Although there was little quantitative evidence that receiving genetic test results led to a significant impact on children's psychosocial wellbeing, it was found that methodological inconsistencies, small samples, and reliance on assessments most appropriate for psychopathology make any firm conclusions about the impact of genetic testing on children premature.Conclusion: Currently, there is insufficient evidence to inform a nuanced understanding of how children respond to genetic testing. This suggests a strong need for further research that uses rigorous approaches to address children's emotional states, self-perception, and social wellbeing.

This chapter describes and critiques the state of the science with respect to understanding how genetic information has been, and how genomic information might, in the future, be used to improve health by encouraging health behaviors that decrease chronic disease risk. To this end, it reviews studies in which the impact of providing genetic information has been evaluated as a means to influence behavioral outcomes. It then identifies gaps in the research and recommends new conceptual and methodological directions to accelerate this field of research. Lastly, it recommends roles that social and behavioral science can play in the next generation of research to consider the translation potential of genomic information for public health benefit.

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Accepting the proposal by Ravitsky and Wilfond (2006) to adopt a "result- evaluation approach" would likely increase the number of studies that returned genetic test results to participants. Furthermore, this approach would represent a shift away from the customary methods of genetic research (not returning results) towards the approach used for provision of genetic tests in a clinical setting (i.e., trained genetic counselors returning results generated in Clinical Laboratory Improvement Amendments (CLIA)-certified labs). Based upon the principles of beneficence, nonmaleficence and respect for persons, we will argue that when researchers adopt roles traditionally held by clinicians, they must also accept the duty to recontact study participants when new information is discovered. We content that this obligation exists regardless of whether or not the genetic test results were disclosed to research participants, and suggest that the threshold of what is considered reportable information should be lower if participants know their genetic test results. The ethical foundations of the duty to recontact have been debated in the context of clinical care (Hunter et al. 2001; Knoppers 2001), but the principles apply to researchers who return genetic results as well. When developing ethical 1 The opinions expressed in this article are those of the authors and do not reflect the opinions