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.
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.
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.
Zimmerman, Deena R. (Deena Rachel)
Nelson, Myra Schaub.
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.