Studies on Understanding Individual Willingness to Disclose Genetic Information to Public and Private Stakeholders
Studies on Understanding Individual Willingness to Disclose Genetic Information to Public and Private Stakeholders
Loading...
Files
Publication or External Link
Date
2013
Authors
Balaram, Sathvik
Dunn, Tyler
Harris, Michael
Kohn, Joshua
Le, Hai
Lee, Christina
Lieberman, Ori
Lin, Tiffany
Sachs, Aaron
Advisor
Agarwal, Ritu
Prasad, Kislaya
Prasad, Kislaya
Citation
DRUM DOI
Abstract
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.