Final Report (all chapters)

ultimately benefits more the patients or the pharmaceutical companies involved in its
development.
The researchers also surveyed a group of medical professionals. Not surprisingly, the study
found several important differences in how professionals and patients evaluated somatic gene
therapy. The professionals’ concerns revolved mainly around the safety and efficacy of this
treatment. The study showed that for these health care professionals, the notion that some
patients may not consider gene therapy a treatment at all was difficult to accept.
The example just discussed is not exceptional. Time and again, non-professional
assessments of bioethical dilemmas focus on substantive rather than procedural issues.
Laypersons question the ends as opposed to simply examining the means. They wonder whether
new cures such as gene therapy are another instance of a social problem being transformed by
the medical profession and the pharmaceutical industry into a medical condition. On the other
end, many of the traditional preoccupations of professional bioethicists, such as autonomy,
beneficence, non-malfeasance, and justice, are not or only marginally reflected in these patients’
concerns.
A third example of how professionals and laypersons may differ in their respective
assessments of ethical priorities is provided by a comparative study of genetic counseling. 29 A
group of citizens was assembled that was directly affected by genetic conditions, but with no
prior connections to advocacy groups. Included also were genetic counselors, medical
geneticists, and public health professionals. The study was designed to elicit and rank concerns
from each of these groups. The results were revealing. Among patients, respect and accuracy of
the information provided ranked first and second, respectively. By contrast, topics of
considerable interest to bioethicists, such as privacy, non-directive counseling, and informed
consent, were notably missing from the patients’ concerns.
Yet another telling illustration of the differences between professionals’ and laypersons’
approaches to ethical dilemmas is provided by coping strategies adopted by parents after learning
that they most likely will have a disabled child. A somewhat dated but suggestive qualitative
analysis of these parents’ strategies shows that parents do not decide to abort pregnancies (or to
keep babies, for that matter) based on statistical probabilities. Whether parents face a 20 percent
or a 70 percent chance of having a disabled child is not decisive. The prospective parents assess
first how their life might change if a disabled child entered their lives, and what it would be like
to care for this child. If they conclude that they will be able to cope with the challenge of raising
a disabled child, then they are likely to have the baby. If on the other hand they come to the
conclusion that they would not be able to care for the child, they are likely to interrupt the
pregnancy. And when they are unable to make a positive decision, they tend to let the fate
decide. 30 Compare this approach to professional norms. There is considerable anecdotal evidence
29
30
Dorothy C. Wertz and Robin Gregg, "Genetics Services in a Social, Ethical and Policy Context: A Collaboration
between Consumers and Providers," Journal of Medical Ethics 26 (2000).
Abby Lippman-Hand and Clarke F. Fraser, "Genetic Counseling: Parents’ Responses to Uncertainty," Birth
Defects: Original Article Series 15 (1979). A much more differentiated and more recent discussion of this issue
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