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Four years ago The Hastings Center initiated a
“pluralism project.” That project gave the
Center staff a chance to explore one swath of the theoretical
literature concerning how members of democratic regimes
ought to think about and respond to the differences among
themselves. Much of that literature, produced by philosophers
like Charles Taylor, Martha Nussbaum, and John Kekes, is
wonderfully articulate about difference in general. But
it is nearly silent about how particular categories of
difference actually make a difference in the lives of particular
individuals negotiating particular institutions.
Critics from a variety of camps have argued that
bioethics has suffered an indifference to “difference.”
Cases have been described as thin and the selves inhabiting
them hollow. This criticism has been driven at least in
part by a reworked conception of the self. The rational
and autonomous self that once dominated bioethics discourse
has been replaced with a more “textured” self,
a self embedded in stories, relationships, families, communities,
cultures, and other “thick” particularity—such
as race, ethnicity, gender, sexual orientation, religion,
and experience generally. The import of such a self is
not simply descriptive accuracy; these contextual details—these
differences—matter. They matter because they figure
importantly into our ethical analyses of cases, affecting,
for example, how we interact with and treat patients. And
with this shift has come increasing attention to the processes
of moral inquiry that enable inquirers to gather all of
this moral information and find their way from complex
cases to context-sensitive responses.
Modern feminism has been preoccupied with difference.
An early and continuing struggle has been to acknowledge
differences between men and women without having those
differences used against women. That struggle has been
extended to recognizing differences among women. By the
end of the 1980s, women were calling for a “politics
of difference” in which “redefining our
differences, learning from them, becomes the central
task.” Although cautioning words were raised by
some, feminists in general moved to trying not only to
recognize but to celebrate difference.
Cultural difference has been largely ignored within
bioethics, particularly within the end-of-life discourses
and practices that have developed over the past two decades
in the U.S. healthcare system. Yet how should culture—specifically
cultural differences as reflected among groups defined
as ethnically or racially different—be taken into
As part of an effort to look at “what differences
make a difference” for bioethicists interested in
clinical decisionmaking, Erik Parens, the editor of this
special section, asked us to look at social class. When
we began our research for this paper, we were surprised
to find that although bioethicists have written much on
social class and such macrolevel issues as access to healthcare
and the distribution of scarce resources, and have paid
some attention to the effects of class on patient-provider
relationships, bioethicists have written little specifically
that looks at the implications of social class for medical
decisions in individual cases.
When attempting to answer the question, “What
difference does religion make?” in the context of
clinical healthcare, one might be tempted to leap to either
of two rather obvious, but seemingly contradictory conclusions.
On the one hand, we might have a general impression of
religion not making much of a distinctive and clear difference,
at least in the actions and outcomes of most cases of clinical
interaction. Those of us in the bioethics world of discourse
are likely to think only of the less common cases of Christian
Scientists, Jehovah's Witnesses, Orthodox Jews, or
certain “fringe” religious groups who seem
to the majority of the population to hold especially sectarian,
if not “irrational,” beliefs about medical
matters. The so-called mainstream religious groups do not
get much attention because they largely don't cause
much trouble (at least where their religion is concerned);
they have learned to bracket their religious commitments
from at least any professional settings (if they even understand
how those commitments relate to healthcare at all); or
they don't hold views entailing consequences any different
from those of most nonbelieving, generally upright individuals.
Furthermore, although religious believers may have some
distinctive views, these views don't often noticeably
manifest themselves in distinctive or significant
When addressing cultural and religious differences
in the clinical setting we need to be realists. Despite
our public homage to pluralism and good intentions, it
is just not possible to overcome all the differences that
might exist and achieve perfect understanding of others.
Try as we may, we will never be able to see perfectly the
world through another's eyes. Instead of reaching
for such perfection, we should instead reach for an approximation
of shared understanding that will promote discourse and
civility when peoples of different races, genders, cultures,
religions, and sexual preferences interact in the clinic.
People with disabilities use more medical care and see
health professionals more often than do those of the same
age, ethnic group, or economic class who do not have impairments.
An indisputable medical goal is “preventing, ameliorating,
or curing disease and its associated effects of suffering and
disability, and thereby restoring, or preventing the loss of,
normal function or of life.”
In responding to our paper “Germ-Line Therapy
to Cure Mitochondrial Disease: Protocol and Ethics of In
Vitro Ovum Nuclear Transplantation” (CQ
Vol 4., No. 3), Matthew D. Bacchetta and Gerd Richter include
several misinterpretations and misrepresentations of our
IVONT protocol and structure for ethical debate. We actively
invited scrutiny of our IVONT protocol; however, for us
to seriously respond to criticisms of our publication,
we suggest respectfully that those who critique the article
critique the protocol that we proposed. First and foremost,
we certainly do not have a “misunderstanding of cellular
biology” regarding mitochondrial genetics.
We appreciated the important commentary provided
by Michelle Oberman on our paper, “Discontinuing
Life Support in an Infant of a Drug-Addicted Mother: Whose
Decision Is It?” (CQ Vol. 6, No. 1). For
the most part we agree with Oberman's analysis of
the issues, but there are seven points of variance, either
of conception, emphasis, or accuracy. We wish to clarify
these and welcome the chance her commentary provided to
offer aspects of the social situation surrounding the case
Genetic counselors are on the front lines of the
genetic revolution, presented with tests of varying predictive
values and reliability, unfair testing distribution mechanisms,
tests for conditions where no treatment exists, and companies
that oversell the usefulness of their tests to physicians
and nurses. Many scholars, both genetic testing task forces
as well as the newly formed National Bioethics Advisory
Commission, have all noted that genetic counseling programs
and services are critical for adequate genetic testing.
At the same time, in our own work at the University of
Pennsylvania we have encountered many requests for new
materials for training genetic counselors in ethics and
providing ethics resources for genetic counseling. One
of us has noted elsewhere that it is crucial that resources
from the Human Genome Project, the Centers for Disease
Control, and other public agencies be devoted to providing
better resources for genetic counselors facing difficult
ethical issues. Although the American Board
of Genetic Counseling requires that training programs include
some formal coursework in ethics, many wonder whether enough
is being done to prepare genetic counselors for an ever-tougher
job, and in particular there has been much concern expressed
about whether “nondirectiveness” is an outmoded
ideal that hampers this profession as it attempts to grow
and identify the value of its practice. On the basis of
many comments to us by genetic counselors and on the basis
of our review of the current literature, we hypothesized
that accredited genetic counseling training programs are poised at the
turn of the century to begin planning a new approach to
teaching the philosophy of genetic counseling, one that integrates
philosophical, theoretical, and ethical training throughout the
curriculum in genetic counseling.
On August 1, 1996, due to the expiration of the
five-year preservation limit provided by British law for
unclaimed and legally unusable frozen embryos, 3,300 embryos
were thawed and discarded. In Italy the news of this
impending event triggered many reactions among scholars
as well as the general population. In Massa, a little
town in Tuscany, a most unusual response arose.
Two hundred women banded together and asked to carry out
a prenatal adoption. Their purpose in making this request
was to avoid what they believed to be mass infanticide.
Many of the women were married and already had children.
They belonged to a local Catholic association. Nonetheless,
their reaction was their own response to numerous appeals
to respect life by the Catholic Church worldwide and by
Italian Catholic thinkers especially.
Interdisciplinary hospital ethics committees have
been the most common response to the mandates for ethical
review procedures set forth by the Joint Commission for
the Accreditation of Health Care Organizations (JCAHO,
1995 Standards), the American Hospital Association, and
within institutions themselves. A 1989 national survey
reported that 60% of hospitals had ethics committees.
However, little is still known about the current state
of these committees in hospitals, their composition, what
functions are performed, or what issues are discussed.
Anyone with so much as a passing familiarity with
bioethics knows how significantly and persistently (at
least since mid-century) the law has insinuated itself
into healthcare and the process of bioethical decisionmaking.
Viewed from the insular perspective of traditional medical
practice and medical ethics, it is not surprising that
the “legalization” of the patient–physician
relationship and clinical judgment has been characterized
by some as pernicious. What is much more surprising, however,
is when a book by a professor of law evinces the same jaundiced
view of the role of law in this area. Nonetheless, the
“limits” that Professor Dworkin considers to
be inherent in the capacity of the law to resolve bioethical
issues are significant, and hence in his opinion the role
of the law should be severely circumscribed. This gloomy
portrait of the “havoc” wreaked by law upon
the landscape of medical practice, painted by a lawyer,
stands in stark contrast to an earlier and much more sympathetic
account offered by Columbia University historian and medical
humanities professor David J. Rothman in his 1991 book
Strangers at the Bedside, the informative subtitle
of which is A History of How Law and Bioethics Transformed
Medical Decision Making.
This section is meant to be a mutual effort. If you find
an article you think should be abstracted in this section,
do not be bashful—submit it for consideration
to Kenneth V. Iserson care of CQ. If you do not like the
editorial comments, this will give you an opportunity to
respond in the letters section. Your input is desired and