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.

Recombinant Adeno-Associated Virus-Mediated Gene Therapy for Treatment of Familial Hypercholesterolemia in Rabbits

Familial hypercholesterolemia (FH) is a genetic disorder characterized by abnormally high concentrations of low-density lipoprotein-cholesterol (LDLcholesterol) in the blood that can contribute to heart disease. FH can result from a defect in the gene for the LDL receptor (LDL-R). FH patients lacking functional LDL-R may benefit from viral-mediated transfer of a functional copy of the open reading frame (ORF) of the LDL-R. Since a recombinant adeno-associated virus (rAAV) is not immunogenic and can be mass-produced, it shows promise for gene therapy applications. AAV6 and AAV8 have been shown to specifically transduce hepatocytes in several species, which normally remove the majority of LDL-cholesterol from the blood via LDL-R-mediated endocytosis. Because of the potential of rAAV to treat FH by delivery of a correct LDL-R ORF to hepatocytes, the liver specificity of these two AAV serotypes was evaluated. Additionally, rabbits were chosen as the animal model for this study because a specific strain of rabbits, Watanabe heritable hyperlipidemic (WHHL), adequately mimics the pathology of FH in humans. Exposure of rabbit liver to rAAV with the marker LacZ and subsequent inspection of liver tissue showed that AAV8 transduced rabbit liver more efficiently than AAV6. To assess the feasibility of producing a rAAV capable of transferring the LDL-R ORF to rabbit hepatocytes in vivo, rAAV8-LDL-R was mass-produced by a baculovirus system in suspension grown insect cells.

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.