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

dc.contributor.advisorAgarwal, Ritu
dc.contributor.advisorPrasad, Kislaya
dc.contributor.authorBalaram, Sathvik
dc.contributor.authorDunn, Tyler
dc.contributor.authorHarris, Michael
dc.contributor.authorKohn, Joshua
dc.contributor.authorLe, Hai
dc.contributor.authorLee, Christina
dc.contributor.authorLieberman, Ori
dc.contributor.authorLin, Tiffany
dc.contributor.authorSachs, Aaron
dc.date.accessioned2013-05-01T18:59:47Z
dc.date.available2013-05-01T18:59:47Z
dc.date.issued2013
dc.description.abstractWhile 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.en_US
dc.identifier.urihttp://hdl.handle.net/1903/13883
dc.language.isoen_USen_US
dc.relation.isAvailableAtDigital Repository at the University of Maryland
dc.relation.isAvailableAtGemstone Program, University of Maryland (College Park, Md)
dc.subjectGemstone Team MAGICen_US
dc.subjectgeneticsen_US
dc.subjectgenetic sequencingen_US
dc.subjectprivacyen_US
dc.titleStudies on Understanding Individual Willingness to Disclose Genetic Information to Public and Private Stakeholdersen_US
dc.typeThesisen_US

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