Final Report (all chapters)

a fairly limited spectrum of the pool of ethical arguments policy-makers should include in their
decision-making process.
The case of synthetic human growth hormone discussed in chapter 2 provides a first
(negative) illustration of the importance of making a broad pool of ethical arguments available to
decision-makers. In that case, the Endocrinologic and Metabolic Drugs Advisory Committee
decided to approve the use of human growth hormone for non-therapeutic uses based largely on
testimonies offered the pharmaceutical industry and patients. A few dissenting voices were
heard, but listening to critics was a formality rather than an important element of the decisionmaking
process. The narrow scope of the arguments presented to the committee suggested that
this advisory committee would have recommended including idiopathic shortness on the list of
FDA-approved indications for the use of human growth hormone. This is exactly what the
committee recommended.
A case study of patients’ evaluation of somatic gene therapy provides an illustration of the
discrepancy between laypersons’ and professionals’ perspectives on bioethical dilemmas. 26
Among bioethicists and medical professionals, gene therapy is generally viewed as a benign
biomedical development. Its potential benefits are substantial, while the risks are negligible;
issues of patient selections, informed consent, and confidentiality of personal data do not seem to
pose significant problems. The health care costs of this treatment remain very high and are
clearly regarded as source of concern. This, in a nutshell, is the professional take on gene therapy
trials. 27
Patients with disabilities draw a much more nuanced and problematic picture of this
potential cure. These patients expressed 11 distinct ethical concerns, many of which have not
played a significant role in mainstream bioethical debates. Among them are the relationship
between disability and personal identity and between genetic changes and personal identity.
Several patients found that their disabilities, for better or worse, had become part of their
identities, and that by removing these disabilities, something irreplaceable would be lost. The
possible impact of somatic gene therapy on attitudes toward disabilities was a second concern.
Some disabled individuals thought that society would be impoverished if certain disabilities were
to disappear. This is indeed a recurrent topic, especially among deaf persons, who often do not
consider themselves disabled but rather members of a distinctive subculture. Many prospective
patients were worried that society would impose what might be called eugenic pressure, a worry
that is either ignored or quickly dismissed by professional bioethicists. Some patients also were
concerned about the rationale offered by pharmaceutical companies and the medical
establishment for developing the treatment. 28 These individuals wondered whether gene therapy
26
27
28
Leach Sculley, Rippberger, and Rehmann-Sutter, "Non-Professional Evaluation of Gene Therapy Ethics."
LeRoy Walters and Julie Gage Palmer, The Ethics of Human Gene Therapy (Oxford: Oxford University Press,
1996).
Leach Sculley, Rippberger, and Rehmann-Sutter, "Non-Professional Evaluation of Gene Therapy Ethics,"
p.1417-18.
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