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.

The tithe: Public research university STEM faculty perspectives on sponsored research indirect costs

This study sought to understand the phenomenon of faculty involvement in indirect cost under-recovery. The focus of the study was on public research university STEM (science, technology, engineering and mathematics) faculty, and their perspectives on, and behavior towards, a higher education fiscal policy. The explanatory scheme was derived from anthropological theory, and incorporated organizational culture, faculty socialization, and political bargaining models in the conceptual framework. This study drew on two key assumptions. The first assumption was that faculty understanding of, and behavior toward, indirect cost recovery represents values, beliefs, and choices drawn from the distinct professional socialization and distinct culture of faculty. The second assumption was that when faculty and institutional administrators are in conflict over indirect cost recovery, the resultant formal administrative decision comes about through political bargaining over critical resources. The research design was a single site, qualitative case study with a focus on learning the meaning of the phenomenon as understood by the informants. In this study the informants were tenured and tenure track research university faculty in the STEM fields who were highly successful at obtaining Federal sponsored research funds, with individual sponsored research portfolios of at least one million dollars. The data consisted of 11 informant interviews, bolstered by documentary evidence. The findings indicated that faculty socialization and organizational culture were the most dominant themes, while political bargaining emerged as significantly less prominent. Public research university STEM faculty are most concerned about the survival of their research programs and the discovery facilitated by their research programs. They resort to conjecture when confronted by the issue of indirect cost recovery. The findings direct institutional administrators to consider less emphasis on compliance and hierarchy when working with expert professionals such as science faculty. Instead a more effective focus might be on communication and clarity in budget processes and organizational decision-making, and a concentration on critical administrative support that can relieve faculty administrative burdens. For higher education researchers, the findings suggest that we need to create more sophisticated models to help us understand organizations dependent on expert professionals.

The relationship between health literacy and indicators of informed decision making for colorectal cancer screening among African Americans

African Americans are disproportionately affected by colorectal cancer (CRC) incidence and mortality. CRC early detection leads to better treatment outcomes and, depending on the screening test, can prevent the development of CRC. African Americans, however, are screened less often than Whites. Aspects of decision making (e.g., decisional conflict, decision self-efficacy) can impact decision making outcomes and may be influenced by social determinants of health, including health literacy. However the relationship between social determinants of health and indicators of decision making in this population is not fully understood. Additionally, individuals have a choice between different CRC screening tests and an individual’s desire to use a particular screening test may be associated with social determinants of health such as health literacy. This study aimed to examine the relationship between social determinants of health and indicators of decision making for CRC screening among African Americans. A total of 111 participants completed a baseline and 14-month follow-up survey assessing decisional conflict, decision self-efficacy, decisional preference (shared versus informed decision making), and CRC test preference. Health literacy was negatively associated with decisional conflict and positively associated with decision self-efficacy (ps < .05). Individuals who were unemployed or working part-time had significantly greater decisional conflict than individuals working full-time (ps < .05). Individuals with a first-degree family history of CRC had significantly lower decision self-efficacy than individuals without a family history (p < .05). Women were significantly more likely to prefer making a shared decision rather than an informed decision compared to men (p < .05). Lastly, previous CRC screening behavior was significantly associated with CRC test preference (e.g., individuals previously screened using colonoscopy were significantly more likely to prefer colonoscopy for their next screening test; ps < .05). These findings begin to identify social determinants of health (e.g., health literacy, employment) that are related to indicators of decision making for CRC among African Americans. Furthermore, these findings suggest further research is needed to better understand these relationships to help with the future development and improvement of interventions targeting decision making outcomes for CRC screening in this population.