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.

COLLEGE STUDENTS’ ATTITUDES TOWARD SEEKING PROFESSIONAL HELP: THE ROLE OF SOCIAL CLASS, CLASSISM, AND STIGMA

Research on attitudes toward seeking professional help among college students has examined the influence of social class and stigma. This study tested 4 theoretically and empirically derived structural equation models of college students’ attitudes toward seeking counseling with a sample of 2230 incoming university students. The models represented competing hypotheses regarding the manners in which objective social class, subjective social class, classism, public stigma, stigma by close others, and self-stigma related to attitudes toward seeking professional help. Findings supported the social class direct and indirect effects model, as well as the notion that classism and stigma domains could explain the indirect relationships between social class and attitudes. Study limitations, future directions for research, and implications for counseling are discussed.