Final Report (all chapters)

elatively mundane. 67 For example, the RAC has always refused to explicitly condemn germ-line
genetic engineering, focusing instead on traditional bioethical concerns such as informed consent
and safety. In sum, a scientific body of self-governance as exemplified by the RAC is largely
incompatible with a broad ethical analysis. In plain terms, the main reason why the RAC in its
early days was regarded as a legitimate body of self-regulation was the absence of any
significant disagreement between the scientific community and the public about the need to
carefully monitor rDNA research. In the case of modern biomedical research, scientists and the
public are only partially in agreement on what constitutes acceptable research protocols. For this
reason, attempts by an RAC-like body to unilaterally resolve these controversies would not be
regarded by the public as legitimate.
Could the RAC be redesigned to become a credible and effective system of governance?
Technically, yes. A redesigned RAC would have to consider a much broader range of views. The
inclusion of a few representatives of public interest groups on this body is probably a necessary
first step, though certainly not a sufficient one. As our discussion of public attitudes toward new
biomedical technologies in chapter 8 shows, it is often incorrect to assume that public interest
groups accurately reflect the views of the general public. Nor are professional ethicists always or
necessarily in the best position to articulate critical ethical issues. Recent studies of patients’
moral reasoning have shown that the ethical arguments for and against new medical technologies
are much broader and often deeper than those offered by professional ethicists. 68
Rules of representation would have to be changed as well. Currently, the RAC charter
defines representation in functional terms, thus assuring that scientific and technical expertise is
adequately represented on the committee. Scientific competence is certainly an important
requirement, but we doubt that it should have a dominant role in the appointment process. The
appointment rules would have to be revised, as well. At present, the NIH director is responsible
for all appointments to the RAC. This may be acceptable for an obscure body of oversight that
operates essentially like a club, but it would clearly be difficult to justify this rule for a decisionmaking
body with broad regulatory authority. Finally, the RAC tends to develop its
recommendations in an informal way. To our knowledge, no specific rules of decision-making
exist. In the past, the chair of the subcommittee on gene therapy made an effort to craft a
consensus; other subcommittee may have been governed by different informal rules. 69 How
conflicts on the gene therapy subcommittee were resolved when a consensus could not be crafted
is unclear, but obviously this is an issue that cannot be left unresolved.
An RAC redesigned according to these criteria can no longer be described as a system of
self-regulation. It would certainly not be considered as such by the scientific community. But it
could become a respected body of governance if it succeeded in projecting an image of fairness
and impartiality.
67
68
69
Weiner, "Is Self-Regulation Enough Today? Evaluating the Recombinant DNA Controversy."
Leach Sculley, Rippberger, and Rehmann-Sutter, "Non-Professional Evaluation of Gene Therapy Ethics."
Interview with Leroy Walters, October 29, 2002.
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