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 Educational Imaginary in Radical Reconstruction: Congressional Public Policy Rhetoric and American Federalism, 1862-1872

Facing the exigencies of Emancipation, a South in ruins, and ongoing violence, between 1862 and 1872 the United States Congress debated the role education would play in the postbellum polity. Positing schooling as a panacea for the nation’s problems, a determiner of individual worth, and a way of ameliorating state and federal tensions, congressional leaders envisioned education as a way of reshaping American political life. In pursuit of this vision, many policymakers advocated national school agencies and assertive interventions into state educational systems. Interrogating the meaning of “education” for congressional leaders, this study examines the role of this ambiguous concept in negotiating the contradictions of federal and state identity, projecting visions of social change, evaluating civic preparedness, and enabling broader debates over the nation’s future. Examining legislative debates over the Reconstruction Acts, Freedmen’s Bureau, Bureau of Education, and two bills for national education reform in the early 1870s, this project examines how disparate educational visions of Republicans and Democrats collided and mutated amid the vicissitudes of public policy argument. Engaging rhetorical concepts of temporality, disposition, and political judgment, it examines the allure and limitations of education policy rhetoric, and how this rhetoric shifted amid the difficult process of coming to policy agreements in a tumultuous era. In a broader historical sense, this project considers the role of Reconstruction Era congressional rhetoric in shaping the long-term development of contemporary Americans’ “educational imaginary,” the tacit, often unarticulated assumptions about schooling that inflect how contemporary Americans engage in political life, civic judgment, and social reform. Treating the analysis of public policy debate as a way to gain insights into transitions in American political life, the study considers how Reconstruction Era debate converged upon certain common agreements, and obfuscated significant fault lines, that persist in contemporary arguments.

INFORMATION TECHNOLOGY PROJECTS IN NONPROFIT UNIVERSITY: A PROJECT GOVERNANCE PERSPECTIVE

The universities rely on the Information Technology (IT) projects to support and enhance their core strategic objectives of teaching, research, and administration. The researcher’s literature review found that the level of IT funding and resources in the universities is not adequate to meet the IT demands. The universities received more IT project requests than they could execute. As such, universities must selectively fund the IT projects. The objectives of the IT projects in the universities vary. An IT project which benefits the teaching functions may not benefit the administrative functions. As such, the selection of an IT project is challenging in the universities. To aid with the IT decision making, many universities in the United States of America (USA) have formed the IT Governance (ITG) processes. ITG is an IT decision making and accountability framework whose purpose is to align the IT efforts in an organization with its strategic objectives, realize the value of the IT investments, meet the expected performance criteria, and manage the risks and the resources (Weil & Ross, 2004). ITG in the universities is relatively new, and it is not well known how the ITG processes are aiding the nonprofit universities in selecting the right IT projects, and managing the performance of these IT projects. This research adds to the body of knowledge regarding the IT project selection under the governance structure, the maturity of the IT projects, and the IT project performance in the nonprofit universities. The case study research methodology was chosen for this exploratory research. The convenience sampling was done to choose the cases from two large, research universities with decentralized colleges, and two small, centralized universities. The data were collected on nine IT projects from these four universities using the interviews and the university documents. The multi-case analysis was complemented by the Qualitative Comparative Analysis (QCA) to systematically analyze how the IT conditions lead to an outcome. This research found that the IT projects were selected in the centralized universities in a more informed manner. ITG was more authoritative in the small centralized universities; the ITG committees were formed by including the key decision makers, the decision-making roles, and responsibilities were better defined, and the frequency of ITG communication was higher. In the centralized universities, the business units and colleges brought the IT requests to ITG committees; which in turn prioritized the IT requests and allocated the funds and the resources to the IT projects. ITG committee members in the centralized universities had a higher awareness of the university-wide IT needs, and the IT projects tended to align with the strategic objectives. On the other hand, the decentralized colleges and business units in the large universities were influential and often bypassed the ITG processes. The decentralized units often chose the “pet” IT projects, and executed them within a silo, without bringing them to the attention of the ITG committees. While these IT projects met the departmental objectives, they did not always align with the university’s strategic objectives. This research found that the IT project maturity in the university could be increased by following the project management methodologies. The IT project management maturity was found higher in the IT projects executed by the centralized university, where a full-time project manager was assigned to manage the project, and the project manager had a higher expertise in the project management. The IT project executed under the guidance of the Project Management Office (PMO) has exhibited a higher project management maturity, as the PMO set the standards and controls for the project. The IT projects managed by the decentralized colleges by a part-time project manager with lower project management expertise have exhibited a lower project management maturity. The IT projects in the decentralized colleges were often managed by the business, or technical leads, who often lacked the project management expertise. This research found that higher the IT project management maturity, the better is the project performance. The IT projects with a higher maturity had a lower project delay, lower number of missed requirements, and lower number of IT system errors. This research found that the quality of IT decision in the university could be improved by centralizing the IT decision-making processes. The IT project management maturity could be improved by following the project management methodologies. The stakeholder management and communication were found critical for the success of the IT projects in the university. It is hoped that the findings from this research would help the university leaders make the strategic IT decisions, and the university’s IT project managers make the IT project 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.