Final Report (all chapters)

that medical personnel often encourage, in subtle but no less effective ways, prospective parents
to consider an abortion when an amniocentesis indicates a strong likelihood of a severe
disability. 31
Each of the examples discussed in this section makes a similar point: Bioethicists, medical
professionals, patients, and the public differ in important ways in how they approach modern
bioethical dilemmas. Moreover, these examples demonstrate that lay views widen the pool of
relevant ethical arguments in important ways. We are certainly not claiming that the public
always or necessarily offers superior ethical arguments. Our contention is simply that a broad
process of public consultation on difficult ethical dilemmas is likely to expand in significant
ways the pool of relevant ethical arguments. A large pool of ethical views is indispensable to
politicians and administrators responsible for crafting broadly acceptable responses to the
dilemmas created by new biomedical research. Conversely, regulatory institutions that by design
limit the pool of available ethical arguments are likely to exacerbate societal divisions.
10.5 Who Should Be Consulted?
Simply advocating a process of broad public consultation leaves an important question open:
Who exactly is “the public” in a public consultation? Administrators have often been faced with
this question, either because a statute requires them to solicit public input (more on this in
section 10.9), or because agency policy demands it, or else because failure in the past to include
one or the other constituency has led to a protracted and acrimonious process of decisionmaking.
As a matter of practice, then, many administrators operating in charged regulatory
environments, the EPA and the DOE being two examples, have found ways to translate abstract
demands of inclusiveness into viable administrative practices.
Central to administrative notions of inclusiveness is the concept of “stakeholders.”
Identifying critical stakeholders, from an administrative point of view, is far simpler than
involving the public in its entirety. Administrators do not need to seek out stakeholders; these
individuals and groups literally run into their offices to “inform” and to lobby them. These are
the stakeholders the agency ignores at its own risk. The public, on the other hand, must be
invited, motivated, and cajoled to participate in matters often perceived as distant and complex.
In more recent times, federal agencies have adopted more elaborate strategies designed to ensure
that all stakeholders, including those that traditionally have mistrusted the federal government,
participate in policy-making. These refinements, however, do not affect the view that the public,
as a matter of bureaucratic practice, can be equated to a group of loosely defined key
stakeholders.
31
can be found in Rayna Rapp, "Refusing Prenatal Diagnosis: The Meanings of Bioscience in a Multicultural
World," Science, Technology and Human Values 23, no. 1 (1998); Rayna Rapp, Testing Women, Testing the
Fetus: The Social Impact of Amniocentesis in America (New York: Routledge, 2000).
See Erikson, "Post-Diagnostic Abortion in Germany: Reproduction Gone Awry, Again?."; Michael J.
Malinowski, "Coming into Being: Law, Ethics and the Practice of Prenatal Genetic Screening," Hastings Law
Journal 45 (1994).
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