Matching Items (5)

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Beyond Our Borders? Public Resistance to Global Genomic Data Sharing

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

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.

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Created

Date Created
  • 2016-11-02

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The mouse that trolled (again)

Description

We welcome the opportunity to respond to the commentaries on our paper—The Mouse that Trolled—by Hardy, Sarnoff , and Cordova and Feldman. Their comments are academic criticism in the very best

We welcome the opportunity to respond to the commentaries on our paper—The Mouse that Trolled—by Hardy, Sarnoff , and 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.

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Created

Date Created
  • 2016-03-15

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An Intention- and Outcome-Focused Perspective on the Doubling of the NIH Budget

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.

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.

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Created

Date Created
  • 2017-05

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Maturity and the Right to Refuse Treatment for Cancer: Considering the Societal, Biological, and Legal Implications of Allowing a Minor to Make a Complex Medical Decision

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

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.

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Created

Date Created
  • 2016-05

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Three essays on health and health care in society: public values, genomic policies, and socio-technical futures of our lifespan

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,

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.

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Agent

Created

Date Created
  • 2019