Matching Items (9)
Description
Each of the three essays in this dissertation examine an aspect of health or health care in society. Areas explored within this dissertation include health care as a public value, proscriptive genomic policies, and socio-technical futures of the human lifespan. The first essay explores different forms of health care systems and attempts to understand who believes access to health care is a public value. Using a survey of more than 2,000 U.S. citizens, this study presents statistically significant empirical evidence regarding values and other attributes that predict the probability of individuals within age-based cohorts identifying access to health care as a public value. In the second essay, a menu of policy recommendations for federal regulators is proposed in order to address the lack of uniformity in current state laws concerning genetic information. The policy recommendations consider genetic information as property, privacy protections for re-identifying de-identified genomic information, the establishment of guidelines for law enforcement agencies to access nonforensic databases in criminal investigations, and anti-piracy protections for individuals and their genetic information. The third and final essay explores the socio-technical artifacts of the current health care system for documenting both life and death to understand the potential for altering the future of insurance, the health care delivery system, and individual health outcomes. Through the development of a complex scenario, this essay explores the long-term socio-technical futures of implementing a technology that continuously collects and stores genetic, environmental, and social information from life to death of individual participants.
ContributorsWade, Nathaniel Lane (Author) / Bozeman, Barry (Thesis advisor) / Sarewitz, Daniel (Committee member) / Cook-Deegan, Robert (Committee member) / Arizona State University (Publisher)
Created2019
Description
This thesis studies the 1998-2003 doubling of the National Institutes of Health budget to evaluate how assertions about the impact of research investments compare with actual health and research outcomes. Stakeholders in the doubling noted a variety of outcomes intended to result from the effort. Using public value mapping (Bozeman and Sarewitz, 2005), I have compared stakeholders' stated intentions of what the doubling ought to achieve with the health and research outcomes actually produced. In applying public value mapping, I first conducted interviews and reviewed press releases, Congressional record, news, and other data from the doubling period. Six public values were commonly represented in this data: (1) improving health outcomes (2) reducing the cost of healthcare (3) producing application-relevant knowledge (4) building biosecurity and biodefense capabilities (5) developing the research enterprise (6) economic growth I then inferred causal logic chains by which increasing funding could lead to achievement of the public values and identified four investment intermediaries through which funding would pass in advancing public values. Finally, using proxies, I evaluated if the public values had advanced in a way directly attributable to funding increases. This analysis identified (5) as achieved. (1), (3), (4), and (6) were indeterminate in one of the two components necessary for evaluating public value achievement: either no clear advancement or no direct link between outcomes and doubling investments. (2) was a failure due to the increase in healthcare costs throughout and following the doubling period. These results indicate that complex societal outcomes used to justify incremental research investments are challenging to causally attribute to those same investments, and thus uncertain premises on which to base policy.
ContributorsSrinivasan, Sanjay (Author) / Sarewitz, Daniel (Thesis director) / Cook-Deegan, Robert (Committee member) / Levinson, Rachel (Committee member) / Chemical Engineering Program (Contributor) / Barrett, The Honors College (Contributor)
Created2017-05
Description
Treating a minor diagnosed with cancer is a difficult situation. However, cases in which doctors and the patient's family disagree about the proper course of treatment present complex scenarios when it comes to patient care. The forced treatment of Cassandra Callender came as a result of challenging interactions between the patient, the medical establishment, and the state. While the Connecticut Supreme Court mainly considered Cassandra's maturity and her mother's actions when deciding this case, there were more factors contributing to Cassandra's quality of care than her ability to make decisions. An evaluation of these factors demonstrates important implications for ensuring a minor receives the best care. Cassandra wished to pursue a means of treatment that would have fewer serious side effects than chemotherapy, but her assessment of her prognosis was markedly different than that of her doctors. While it is clear that Cassandra did not fully grasp the likelihood of death without chemotherapy treatment, her perspective should not have been fully ignored. The forced treatment inflicted serious (though short term) harm. To understand the full context of this case, this paper considers relevant legal doctrine, decision-making capabilities of minors, the problems and perils of chemotherapy, the role of the media, and the doctor-patient relationship. Developing a perspective based on these facets of Cassandra's case is important in determining how to facilitate the best interaction between doctor and patient and to make sure that future cases aid the patient and his or her family to make the best decision given the situation. Even when there is no consensus about what is best for a patient, more consideration must be given to the patient's perspective, beyond attempting to solely extend life.
ContributorsStoffer, Sidney Rae (Author) / Brian, Jennifer (Thesis director) / Cook-Deegan, Robert (Committee member) / School of Criminology and Criminal Justice (Contributor) / Department of Psychology (Contributor) / Barrett, The Honors College (Contributor)
Created2016-05
Description
Prospects have never seemed better for a truly global approach to science to improve human health, with leaders of national initiatives laying out their vision of a worldwide network of related projects. An extensive literature addresses obstacles to global genomic data sharing, yet a series of public polls suggests that the scientific community may be overlooking a significant barrier: potential public resistance to data sharing across national borders. In several large United States surveys, university researchers in other countries were deemed the least acceptable group of data users, and a just-completed US survey found a marked increase in privacy and security concerns related to data access by non-US researchers. Furthermore, diminished support for sharing beyond national borders is not unique to the US, although the limited data from outside the US suggest variation across countries as well as demographic groups. Possible sources of resistance include apprehension about privacy and security protections. Strategies for building public support include making the affirmative case for global data sharing, addressing privacy, security, and other legitimate concerns, and investigating public concerns in greater depth.
ContributorsMajumder, Mary A. (Author) / Cook-Deegan, Robert (Author) / McGuire, Amy L. (Author) / School for the Future of Innovation in Society (Contributor)
Created2016-11-02
Description
We welcome the opportunity to respond to the commentaries on our paper—The Mouse That Trolled—by Hardy, Sarnoff , Cordova, and Feldman. Their comments are academic criticism in the very best sense. We also take the opportunity to update on recent legal actions, which we had not predicted. This opportunity enriches our narrative history of the patenting of the APPswe mutation for early onset Alzheimer's disease, and we hope the continued saga is of interest.
ContributorsCook-Deegan, Robert (Author) / Vishnubhakat, Saurabh (Author) / Bubela, Tania (Author) / School for the Future of Innovation in Society (Contributor)
Created2016-03-15
Description
The purpose of the project is to create a survey that will be sent out to thousands of members of the Global Alliance for Genomics and Health (GA4GH) to update GA4GH's Catalogue of Genomic Data Initiatives online. GA4GH's Catalogue of Genomic Data Initiatives has not been updated in several years, leading to outdated and incorrect information. The survey will be used to gather information from genetic groups worldwide to update and increase the amount of data in the Catalogue on the GA4GH website. The questions were created in collaboration with GA4GH and the Human Pangenome Reference Consortium (HPRC). The actual survey was designed on Qualtrics.
ContributorsKapadia, Venus (Author) / Cook-Deegan, Robert (Thesis director) / Tsosie, Krystal (Committee member) / Barrett, The Honors College (Contributor) / Department of English (Contributor) / School of Music, Dance and Theatre (Contributor) / Department of Psychology (Contributor) / School of Life Sciences (Contributor)
Created2023-05
ContributorsKapadia, Venus (Author) / Cook-Deegan, Robert (Thesis director) / Tsosie, Krystal (Committee member) / Barrett, The Honors College (Contributor) / Department of English (Contributor) / School of Music, Dance and Theatre (Contributor) / Department of Psychology (Contributor) / School of Life Sciences (Contributor)
Created2023-05
ContributorsKapadia, Venus (Author) / Cook-Deegan, Robert (Thesis director) / Tsosie, Krystal (Committee member) / Barrett, The Honors College (Contributor) / Department of English (Contributor) / School of Music, Dance and Theatre (Contributor) / Department of Psychology (Contributor) / School of Life Sciences (Contributor)
Created2023-05
Description
This work explores the dynamics in emergence, deployment, and execution of modern technoscientific initiatives in the U.S. government. I focus on the federal initiative that developed vaccine and other responses to the Covid-19 crisis. This included federal policy mechanisms used during crisis, political and financial risk in federal technoscientific solutions, and conditions for technoscientific solutions success. The focus on these dynamics during crisis response is an approach to understanding overarching governance of technoscientific initiatives in non-crisis times. The process of exploration includes a series of interviews with senior officials engaged in technoscientific initiative development. Two studies governed by the tenets of the Delphi approach were completed, one in 2020 with senior government officials engaged in Operation Warp Speed, and another in 2021 with former senior government officials involved in government-funded technoscientific initiatives including the National Nanotechnology Initiative, the National Manufacturing Initiative, and the Precision Medicine Initiative. These results were coded and then the data were triangulated and corroborated through the use of public media, follow up interviews, and fact-checking in the local Washington, D.C. policy network. This work reveals a series of theoretical, policy, and practical results. The theoretical contributions include that high profile technoscientific initiatives are undertheorized in Innovation Policy and Science and Technology Studies. This work also establishes an early typology of U.S. government technoscientific initiatives. In addition, this work suggests policy and practical contributions regarding federal responses to emerging crises, as well as lessons from crisis-intervention policies that might be useful without crises.
ContributorsArnold, Amanda J (Author) / Ross, Heather (Thesis advisor) / Cook-Deegan, Robert (Thesis advisor) / Underiner, Tamara (Committee member) / Hurlbut, J. Ben (Committee member) / Arizona State University (Publisher)
Created2023