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.

INFORMATION PRACTICES DURING LIFE TRANSITION: KOREAN IMMIGRANT WOMEN’S EVERYDAY LIFE INFORMATION SEEKING AND ACCULTURATION

In this dissertation, I explore information practices during life transition in the context of immigration. This study aims to understand how their unique personal, social, and life contexts shape immigration experiences, and how these diverse contexts are related to various information practices that they engage in to resolve daily information needs and achieve immigration goals. In my study I examined daily information needs and acquisition of Korean immigrant women. Data were collected through two interview sessions, diary entries on everyday information seeking up to three weeks, post-diary debriefing interviews to reveal contexts surrounding information practices, and observation sessions. My study shows that one’s accumulated experiences with information-related situations shape the person’s attitudes toward diverse information resources and habitual information practices. Both personal and social contexts surrounding immigrant women change during life transition and shape how they interpret their immigration experiences, what information they need to deal with both daily and long-term goals, and how they modify their information practices to obtain the relevant information in an unfamiliar information environment. Also, life transition of immigration entails changes in immigrant women’s social roles, which engender their daily responsibilities in the new society. These daily responsibilities motivate immigrant women’s everyday interactions with a variety of communities in order to exchange information and conduct their social roles in the new sociocultural environment. While immigrant women had common information needs around culture learning, social roles and associated responsibilities explain differences in their differing information needs and tend to direct daily information practices. The advancement of ICTs allows immigrant women to conduct their social roles in a remote city as well as to maintain multiple connections with both the heritage and host society. Limited cultural knowledge influences immigrant women’s evaluation and use of the obtained information as well as their acquisition of relevant information. This study provides understandings on the role of information during life transition as well as Korean immigrant women’s information practices.

The Promise of Access: Hope and Inequality in the Information Economy

In 2013, a series of posters began appearing in Washington, DC’s Metro system. Each declared “The internet: Your future depends on it” next to a photo of a middle-aged black Washingtonian, and an advertisement for the municipal government’s digital training resources. This hopeful discourse is familiar but where exactly does it come from? And how are our public institutions reorganized to approach the problem of poverty as a problem of technology? The Clinton administration’s ‘digital divide’ policy program popularized this hopeful discourse about personal computing powering social mobility, positioned internet startups as the ‘right’ side of the divide, and charged institutions of social reproduction such as schools and libraries with closing the gap and upgrading themselves in the image of internet startups. After introducing the development regime that builds this idea into the urban landscape through what I call the ‘political economy of hope’, and tracing the origin of the digital divide frame, this dissertation draws on three years of comparative ethnographic fieldwork in startups, schools, and libraries to explore how this hope is reproduced in daily life, becoming the common sense that drives our understanding of and interaction with economic inequality and reproduces that inequality in turn. I show that the hope in personal computing to power social mobility becomes a method of securing legitimacy and resources for both white émigré technologists and institutions of social reproduction struggling to understand and manage the persistent poverty of the information economy. I track the movement of this common sense between institutions, showing how the political economy of hope transforms them as part of a larger development project. This dissertation models a new, relational direction for digital divide research that grounds the politics of economic inequality with an empirical focus on technologies of poverty management. It demands a conceptual shift that sees the digital divide not as a bug within the information economy, but a feature of it.