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 role of new information and communication technologies (ICTs) in information and communication in science. A conceptual framework and empirical study

Problem This dissertation presents a literature-based framework for communication in science (with the elements partners, purposes, message, and channel), which it then applies in and amends through an empirical study of how geoscientists use two social computing technologies (SCTs), blogging and Twitter (both general use and tweeting from conferences). How are these technologies used and what value do scientists derive from them? Method The empirical part used a two-pronged qualitative study, using (1) purposive samples of ~400 blog posts and ~1000 tweets and (2) a purposive sample of 8 geoscientist interviews. Blog posts, tweets, and interviews were coded using the framework, adding new codes as needed. The results were aggregated into 8 geoscientist case studies, and general patterns were derived through cross-case analysis. Results A detailed picture of how geoscientists use blogs and twitter emerged, including a number of new functions not served by traditional channels. Some highlights: Geoscientists use SCTs for communication among themselves as well as with the public. Blogs serve persuasion and personal knowledge management; Twitter often amplifies the signal of traditional communications such as journal articles. Blogs include tutorials for peers, reviews of basic science concepts, and book reviews. Twitter includes links to readings, requests for assistance, and discussions of politics and religion. Twitter at conferences provides live coverage of sessions. Conclusions Both blogs and Twitter are routine parts of scientists' communication toolbox, blogs for in-depth, well-prepared essays, Twitter for faster and broader interactions. Both have important roles in supporting community building, mentoring, and learning and teaching. The Framework of Communication in Science was a useful tool in studying these two SCTs in this domain. The results should encourage science administrators to facilitate SCT use of scientists in their organization and information providers to search SCT documents as an important source of information.

Mechanistic-based Design-Integrated Reliability Validation Framework for Mechanical Systems

Abstract: New product design challenges, related to customer needs, product usage and environments, face companies when they expand their product offerings to new markets; Some of the main challenges are: the lack of quantifiable information, product experience and field data. Designing reliable products under such challenges requires flexible reliability assessment processes that can capture the variables and parameters affecting the product overall reliability and allow different design scenarios to be assessed. These challenges also suggest a mechanistic (Physics of Failure-PoF) reliability approach would be a suitable framework to be used for reliability assessment. Mechanistic Reliability recognizes the primary factors affecting design reliability. This research views the designed entity as a “system of components required to deliver specific operations”; it addresses the above mentioned challenges by; Firstly: developing a design synthesis that allows a descriptive operations/ system components relationships to be realized; Secondly: developing component’s mathematical damage models that evaluate components Time to Failure (TTF) distributions given: 1) the descriptive design model, 2) customer usage knowledge and 3) design material properties; Lastly: developing a procedure that integrates components’ damage models to assess the mechanical system’s reliability over time. Analytical and numerical simulation models were developed to capture the relationships between operations and components, the mathematical damage models and the assessment of system’s reliability. The process was able to affect the design form during the conceptual design phase by providing stress goals to meet component’s reliability target. The process was able to numerically assess the reliability of a system based on component’s mechanistic TTF distributions, besides affecting the design of the component during the design embodiment phase. The process was used to assess the reliability of an internal combustion engine manifold during design phase; results were compared to reliability field data and found to produce conservative reliability results. The research focused on mechanical systems, affected by independent mechanical failure mechanisms that are influenced by the design process. Assembly and manufacturing stresses and defects’ influences are not a focus of this research.