THE HEALTH OF YOUNG ADULTS WITH DISABILITIES IN THE UNITED STATES: THE COLLECTIVE ROLES OF RISK FACTORS IN SOCIAL ECOLOGIC FRAMEWORK

Background: Over the last few decades, the prevalence of young adults with disabilities (YAD) has steadily risen as a result of advances in medicine, clinical treatment, and biomedical technologythat enhanced their survival into adulthood. Despite investments in services, family supports, and insurance, they experience poor health status and barriers to successful transition into adulthood. Objectives: We investigated the collective roles of multi-faceted factors at intrapersonal, interpersonal and community levels within the social ecological framework on health related outcome including self-rated health (SRH) of YAD. The three specific aims are: 1) to examine sociodemographic differences and health insurance coverage in adolescence; 2) to investigate the role of social skills in relationships with family and peers developed in adolescence; and 3) to collectively explore the association of sociodemographic characteristics, social skills, and community participation in adolescence on SRH. Methods: Using longitudinal data (N=5,020) from the National Longitudinal Transition Study (NLTS2), we conducted multivariate logistic regression analyses to understand the association between insurance status as well as social skills in adolescence and YAD’s health related outcomes. Structural equation modeling (SEM) assessed the confluence of multi-faceted factors from the social ecological model that link to health in early adulthood. Results: Compared with YAD who had private insurance, YAD who had public health insurance in adolescence are at higher odds of experiencing poorer health related outcomes in self-rated health [adjusted odds ratio (aOR=2.89, 95% confidence interval (CI): 1.16, 7.23), problems with health (aOR=2.60, 95%CI: 1.26, 5.35), and missing social activities due to health problems (aOR=2.86, 95%CI: 1.39, 5.85). At the interpersonal level, overall social skills developed through relationship with family and peers in adolescence do not appear to have association with health related outcomes in early adulthood. Finally, at the community level, community participation in adolescence does not have an association with SRH in early adulthood. Conclusions: Having public health insurance coverage does not equate to good health. YAD need additional supports to achieve positive health outcomes. The findings in social skills and community participation suggest other potential factors may be at play for health related outcomes for YAD and the need for further investigation.

Studies on Understanding Individual Willingness to Disclose Genetic Information to Public and Private Stakeholders

While technologies for genetic sequencing have increased the promise of personalized medicine, they simultaneously pose threats to personal privacy. The public’s desire to protect itself from unauthorized access to information may limit the uses of this valuable resource. To date, there is limited understanding about the public’s attitudes toward the regulation and sharing of such information. We sought to understand the drivers of individuals’ decisions to disclose genetic information to a third party in a setting where disclosure potentially creates both private and social benefits, but also carries the risk of potential misuse of private information. We conducted two separate but related studies. First, we administered surveys to college students and parents, to determine individual attitudes toward and inter-generational influences on the disclosure decision. Second, we conducted a game-theory based experiment that assessed how participants’ decisions to disclose genetic information are influenced by societal and health factors. Key survey findings indicate that concerns about genetic information privacy negatively impact the likelihood of disclosure while the perceived benefits of disclosure and trust in the institution receiving the information have a positive influence. The experiment results also show that the risk of discrimination negatively affects the likelihood of disclosure, while the positive impact that disclosure has on the probability of finding a cure and the presence of a monetary incentive to disclose, increase the likelihood. We also study the determinants of individuals’ decision to be informed of findings about their health, and how information about health status is used for financial decisions.