Journal of Health Politics Policy & Law

Journal of Health Politics, Policy and Law
Volume 28, Number 6, December 2003
Special Issue: Ideas in American Health Policy


    Fadem, Pamela.
    Minkler, Meredith.
    Perry, Martha.
    Blum, Klaus.
    Moore, Leroy.
    Rogers, Judi.
    Williams, Lee.
  • Attitudes of People with Disabilities toward Physician-Assisted Suicide Legislation: Broadening the Dialogue
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    Subject Headings:
    • People with disabilities -- California -- San Francisco Bay Area -- Attitudes.
    • Assisted suicide -- Law and legislation -- United States.
    • Patients -- Civil rights -- United States.
      This article presents the methods, findings, and implications of a participatory action research project that attempted to shed additional light on the debate over death with dignity (DWD) or physician-assisted suicide (PAS) legislation. In-depth, qualitative interviews with forty-five physically disabled residents of the San Francisco Bay Area, conducted by others with disabilities, revealed a wide breadth of opinions about and attitudes toward such legislation. For close to half of the participants, the desire for autonomy in making end-of-life decisions was a primary concern, yet fear that PAS legislation could violate this autonomy in various ways was a deep concern as well. Also reported were widespread accounts of disability-based discrimination and frequent expressions of fear about openly discussing positions that diverge from the official, publicly held opinions of disability leaders who oppose such legislation. The findings support those of a recent Harris poll demonstrating considerable diversity of opinion about PAS legislation among people with disabilities. The findings further suggest the need for additional research on the apparent disjunction between the diversity of attitudes held by those interviewed and the more unified position taken by many disability activists. Use of the study findings to promote greater dialogue within the community and to better position people with disabilities to take their place at the policy table also is discussed. In addition, the findings are seen as reinforcing the need for the public health community to become more engaged in this central ethical debate.
    Evans, John Hyde, 1965-
  • Commodifying Life? A Pilot Study of Opinions Regarding Financial Incentives for Organ Donation
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    Subject Headings:
    • Donation of organs, tissues, etc. -- Law and legislation -- United States.
    • Donation of organs, tissues, etc. -- Economic aspects -- United States.
    • Terminal care -- Moral and ethical aspects -- United States.
      In recent years many policy proposals have been put forward to create financial incentives to encourage families to allow the harvesting of organs from their deceased relatives. While research has focused on whether these policies would actually increase the supply of organs, no research has focused on testing the ethical concerns about such policies. This article presents the findings of a pilot study conducted to determine whether people think that families should end life support of a family member in order to harvest organs if various incentive policies are in place. While the findings do not suggest a direct effect of these inducements, they do indicate that the amount of money received from organ donation is a consideration in making the decision whether to end life support. The implications of this finding for ethical debates and health policy are reviewed.
    Stevens, Jacqueline, 1962-
  • Racial Meanings and Scientific Methods: Changing Policies for NIH-sponsored Publications Reporting Human Variation
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    Subject Headings:
    • Human genetics -- Research -- Social aspects -- United States.
    • Human genetics -- Variation -- United States.
    • Human genetics -- Government policy -- United States.
    • Minorities -- Health and hygiene -- United States.
      Conventional wisdom holds that race is socially constructed and not based on genetic differences. Cutting-edge genetic research threatens this view and hence also endangers the pursuit of racial equality and useful public health research. The most recent incarnation of racial genetics is not due to scientific discoveries about population differences per se, but follows from how the United States and other governments have organized racial categories. This article explains tensions in U.S. government guidelines and publications on the study of human genetic diversity, points out the absence of any compelling public health benefits that might justify this research, introduces conceptual tools for addressing the complicated heuristic and policy problems posed by medical population genetics, and offers two policy proposals to remedy the current problems.
    Guttman, Nurit.
    Zimmerman, Deena R. (Deena Rachel)
    Nelson, Myra Schaub.
  • The Many Faces of Access: Reasons for Medically Nonurgent Emergency Department Visits
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    Subject Headings:
    • Hospitals -- United States -- Emergency service.
    • Primary care (Medicine) -- United States.
      Investigating why people use the hospital emergency department (ED) for visits considered medically nonurgent can enhance our understanding of people's expectations of health care services, of their conceptions of prudent lay judgment, and of difficulties in negotiating the logistics of primary care services. This study identified reasons for such ED use from users' perspectives in both pediatric and adult visits. Respondents were asked to explain what brought them to the ED and to define an emergency. The study was conducted in two northeastern U.S. hospital EDs. The analysis drew on a convenience sample of 408 (331 pediatric, 77 adult users) face-to-face interviews that employed both open- and closed-ended questions. Findings indicate most patients had medical insurance and a regular place of care and most arrived by car or taxi. Twelve main themes emerged under three main categories: conceptions of needs, appropriateness, and preference for the ED. The findings indicate that various reasons for ED use may be construed as access issues. These include beliefs regarding limited availability of after-hour consultation services and of timely appointments at one's primary care site. Drawing on the findings, a typology that distinguishes between groups of users according to their preference for the ED, a level of congruence between their own reason and their definition of an emergency was developed. The typology suggests that people's concerns that influence their decision to come to the ED cannot be solved simply by expanding primary care services or by educational interventions. Its application yields recommendations for services and interventions.


    Charon, Rita.
  • From Detached Concern to Empathy: Humanizing Medical Practice (review)
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    Subject Headings:
    • Halpern, Jodi. From detached concern to empathy: humanizing medical practice.
    • Medical personnel and patient.
    Lie, Reidar Krummradt.
  • Setting Limits Fairly: Can We Learn to Share Medical Resources? (review)
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    Subject Headings:
    • Daniels, Norman, 1942- Setting limits fairly: can we learn to share medical resources?
    • Sabin, James E.
    • Social medicine.
    Spece, Roy G., 1948-
  • Scarce Goods: Justice, Fairness, and Organ Transplantation (review)
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    Subject Headings:
    • Koch, Tom, 1949- Scarce goods: justice, fairness, and organ transplantation.
    • Transplantation of organs, tissues, etc. -- Moral and ethical aspects -- United States.

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Index to Volume 28

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