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The Ethics of Human Gene Therapy.

The Ethics of Human Gene Therapy. LeRoy Walters and Julie Gage Palmer. New York: Oxford University Press 1997. 209 pp. $29.95.

The considerations that have led toward public acceptance of gene therapy go like this: As long as it is somatic and abstains from tampering with the germ line, and as long as it is therapeutic and abstains from enhancement, gene therapy is okay. But are these legitimate restrictions?

Imagine that you know one of the 15,000 children in the United States with growth hormone deficiency, and that you could have treated the child prenatally with a safe, gene-mediated growth hormone instead of with (expensive) synthetic human growth hormone. What sound reasons do we have to reject such a treatment? What is the moral difference between delivering the gene product, synthesized by recombinant cells in vitro, and delivering the gene itself?

Or imagine we could develop a safe method to stimulate the immune system by introducing a new gene. Would this be ethically wrong simply because the enhancement of the capabilities of the immune system would be achieved by genetic means and not by classical (active or passive) immunization? Immunization, a much-praised strategy for the prevention of infectious disease, might be classed as an enhancement. Why should we now condemn categorically all gene therapies that are "enhancements"? What about those enhancements that could help those worst-off in the natural genetic lottery?

The case for liberating gene therapy from the current moral consensus is led by bioethicist LeRoy Walters and attorney Julie Gage Palmer in The Ethics of Human Gene Therapy, a provocative book that deserves wide and critical attention. The aim of the book is to stimulate discussion that is factually well founded. It gives a comprehensive and understandable state-of-the-art introduction to the scientific issues, explores diverse possible technological developments, and projects intriguing medical scenarios. It also tries to collect and understand the reasons that could be put forward for and against germ line therapy and genetic enhancement.

In the meantime, the debate over germ line therapy may have become even more urgent. The possible combination of nuclear transfer cloning technology with genetic engineering could at least technically provide a way to circumvent the need for elaborate and safe gene replacement techniques. Human somatic cells could be treated with a gene vector, and the desired nucleus could be transferred into a zygote.

The current discussion whether cloning should be banned or only subject to a limited moratorium should take this development into account. The consensus on the restrictions for gene therapy could quickly disappear under the weight of arguments like Walters and Palmer's, which rely on examples to derive an obligation to use germ line therapy or genetic enhancement from the basic therapeutic ethos of medicine or from the principles of justice and solidarity. Such arguments can shift the onus of proof from the proponents to the opponents.

A basic and perhaps typical flaw is evident throughout the book: a question about the acceptability of a certain type of action is isolated from its cultural framework. It is accepted that gene alterations could change the identity of a person or even the identity of the human race. But gene therapy as a concept is also an expression and simultaneously a confirmation of a cultural identity.

When we consider the "modern" project of the technological improvement of nature, and the improvement of the functioning of the body (internal nature, so to speak) by gene alteration, we are urged to a serious consideration of the parallels between them. The body as described by Walters and Palmer is a functional resource. Disease, disability, and premature death are deviations from "species-typical functioning." The goal of medicine is the restoration of species-typical functioning. Consequently, genetic intervention is understood as a means of guaranteeing species-typical functioning wherever it is needed. The "modern" attitude toward external nature is that toward a realm of means--and so is the attitude toward the internal nature of the body. The pattern repeats itself: the logic of one historical epoch is applied to another. Intervention into the germ line and the enhancement of bodily functioning by genetic means can be interpreted as a direct implementation of a pre-existing configuration of the polarity between human identity and nature.

An unbiased ethical understanding of human gene therapy cannot avoid taking the question of identity seriously. Deeply entrenched as we are in specific cultural frameworks, we cannot have an impartial discussion without discussing how these frameworks are the result of choices, and without being sensitive to the ways our conception of identity shapes even the way we approach the moral questions. Walters and Palmer skip this part of the philosophical task. But I hope that the book will be as productive by what it leaves unsaid as by what it says.

Christoph Rehmann-Sutter teaches bioethics and philosophy of nature at the University of Basel, Switzerland. His research interests include "generelated" questions of bioethics and the development of methods in moral philosophy. His latest book (together with Adrian Vatter and Hansjorg Seiler) is Partizipative Risikopolitik (Westdeutscher Verlag, 1998).
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Title Annotation:Review
Author:Rehmann-Sutter, Christoph
Publication:The Hastings Center Report
Article Type:Statistical Data Included
Date:May 1, 1999
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