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ItemManifestations of the Positive Death Movement in America: Medical Aid In Dying, Voluntarily Stopping Eating & Drinking, and End-Of-Life Doulas(Georgia Institute of Technology, 2022-04-06) Incorvaia, Aubrey DeVenyWestern society is in an era of death awareness, its most recent salience: A Positive Death Movement. This dissertation examines manifestations of the movement, framing them as direct, indirect, and induced effects of public policy. Policies have intended consequences, off-target effects, as well as more distant, rippling impacts on society at-large. The empirical research herein investigates these dimensions of policy’s influence, leveraging an assortment of theoretical lenses, which originate from policy design, social psychology, and sociology. Methods incorporate both qualitative and quantitative approaches, tools, and techniques. Chapter one presents the history of American death culture and overviews the movement for death positivity and its scholarship. Chapter two shows that implementation of Medical Aid in Dying (MAID) policy reduces self-harm and undetermined intent death rates for those with cancer. Specifically, use of regression analysis to generate a difference-in-differences estimation indicates that implementation of MAID results in a statistically significant 20 percent reduction in self-harm and undetermined intent cancer death rate, even when controlling for individual and macro-level risk factors. Chapter three examines a church’s response to Voluntarily Stopping Eating and Drinking, revealing that a church community may be a source of legitimacy and support for this end-of-life choice to hasten death in the face of terminal illness. A case study of one southern Anabaptist congregation employs a focus group and one-on-one interviews during which study participants reported their affirmation of VSED, but professed uncertain and conditional involvement in respite care provision post VSED initiation. Responses varied widely to faith-based justifications for the practice. Chapter four uses analytic autoethnography to elucidate a new role arising within the system of deathcare, End-of-Life Doulas (EOLDs). Two EOLD training programs framed their education in hallmark terms of the movement and are seeking to professionalize the role through the use of functionalist / trait – oriented documents, an approach aligned with a ‘sociology of professions’ framework. Chapter five concludes the dissertation by summarizing results and considering opportunities for future research, while also acknowledging the necessity of addressing ongoing impacts of the coronavirus pandemic and the racial reckoning currently underway in the United States.
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ItemBridging the valley of death in biomedicine with translational research: Assessing the impact of National Institutes of Health’s Clinical and Translational Science Award(Georgia Institute of Technology, 2019-06-21) Kim, Yeon Hak HakDespite large investment in biomedical research by government, foundations and private organizations around the world, we are not experiencing an increase in the new medicine reaching the market. Many studies point out that this productivity decline in biomedicine is mainly due to the difficulty in translating basic science into clinical setting. Translational research emerged as a key research policy tool to address this problem over the last decade. Translational research aims to bridge the gap between basic science and clinical science to accelerate the process of moving research innovation into clinical use. In the United States, the National Institutes of Health (NIH) took the lead in supporting translational research by developing the Clinical and Translational Science Award (CTSA) in 2006. In this dissertation, the author examined the impact of NIH’s effort on supporting translational research focusing on two topics, which are collaboration network structure and production of translational publications. Regarding the collaboration landscape, the change of social network analysis measures showed that the CTSA award had an impact in changing the biomedical research landscape into denser and less centralized form. The result of the network regression models showed that receiving CTSA award led individual institutions to collaborate more with other institutions. For the test on the production of translational publications, which is the second topic of interest, a unique measure using the composition of forward citation of publications is introduced. The results from difference-in-difference regression and mediation tests showed that the CTSA award leads to the increase of publications and this relationship is mediated by inter-collaboration feature of institutions after the CTSA program is well stabilized. The author expects that the study will provide insight into the effects of translational research initiatives and have implications on the government policy regarding biomedical research more broadly.
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ItemRisk disclosure on egg donor recruitment advertisements: Current practices & the effect on women's willingness to become an egg donor(Georgia Institute of Technology, 2016-11-15) Alberta, HillaryEgg donation has proven to be a valuable tool in addressing the health issues with infertility. Given the importance of egg donation, it is essential that the procedures related to recruitment, treatment, and compensation of egg donors continue to monitored and evaluated. This dissertation considers the question of risk disclosure at the earliest stage of the egg donor recruitment process: in recruitment advertisements. My research examines whether the recruitment advertisements are the appropriate time in the recruitment process to disclose possible risks of egg donation. Specifically, what, if any, risk disclosures should be included in the recruitment advertisements to ensure that the potential donor understands and considers the risks at the time she decides whether to proceed. There are two parts to my analysis that aim to address this question. The first part assesses risk disclosure rates in egg donor recruitment advertisements collected online. The results show that risk disclosure in egg donor advertisements is rare. The risk disclosure rates are compared between entities subject to the ASRM self-regulatory guidelines and those that are not (i.e. clinics vs. agencies) and between advertisements placed inside of California (i.e. subject to the California state law) and those placed outside of California (i.e. not subject to the California state law). The results suggest that neither the current ASRM self-regulations nor the formal regulations implemented in California were successful in addressing the low risk disclosure rates. The second part of the analysis is a survey administered to current or recent female graduate students attending one of three Georgia universities to provide insight on the effects of disclosing various levels of risk at the earliest stage of the recruitment process. The survey results show that the inclusion of risk at the advertisement level can have a significant association with a woman’s willingness to engage in the donation process. The survey also provided a means of examining how compensation influences the donor’s evaluation of associated risks listed on an advertisement and the interaction between compensation and risk disclosure. The hypothetical response analysis, in particular shows how potential egg donors are at risk of being unduly influenced when they are financially vulnerable. The results from my research have policy implications in several areas related to the recruitment, treatment and compensation of egg donors. The results are discussed in relation to the ethical and policy issues of egg donation and provide insight into how the discussions or the development of oversight can protect the needs of patients struggling with infertility and the safety and autonomy of egg donors.