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Edited by A Nordgren. Acta Universitatis Upsaliensis, 1999, 208 SEK, pp 175. ISBN 915544640X
Gene therapy research and its clinical application raise a large number of ethical, legal, and social questions. Many of these are discussed in Nordgren's anthology. The contributions come from a number of different disciplines, including bioethics, genetics, social science, and theology. The book is divided into five main sections (following a short introduction): scientific aspects of gene therapy; the history of, and prospects for, gene therapy; conceptual issues; gene therapy in a German and Japanese context, and a section on the uses of gene therapy in relation to, for example, testing and screening. The contributions are quite diverse and mostly well worth reading. From the perspective of medical ethics the contributions by LeRoy Walters, Eric Juengst, Karen Lebacqz, Nikolaus Knoepffler, and Christian Munthe are of particular interest.
Walters's contribution focuses in part on the issue of eugenics. He defends a voluntary germ-line gene therapy programme as a means of reducing the transmission of genetic diseases to future generations. In the context thereof he points to differences, in terms of targeted diseases or deviations, between past eugenic programmes and the sort of germ-line genetic intervention programmes that would probably be run today. Walters also discusses the difference between gene therapy and genetic enhancement. He thinks the distinction is vague. Eric Juengst undertakes the task of clarifying the distinction, discussing three accounts of it. These appeal to the goals of medicine, the notion of species-typical functioning and particular concepts of disease, respectively. Juengst argues persuasively that none of these distinctions bear moral weight. For instance, he points out that there are cases of medical treatment leading to above-species-typical functioning that seem obviously morally desirable (for example the use of gene therapy to empower the immune system to eliminate cancer cells). Juengst, however, is not uncritical of genetic enhancement; and there are some affinities between his concern that genetic enhancement should not involve complicity with unjust social biases and Lebacqz's views.
Lebacqz argues that the concept of therapy presupposes a distinction between normal and abnormal. How that distinction is drawn often depends on power structures in society and, hence, is not necessarily based on whether being unusual in some particular respect makes one worse off. Accordingly, gene therapy which targets perceived abnormalities, such as dwarfism, may not benefit anyone. It may simply make people more alike. Lebacqz suggests that if disability is a wholly social construct, it is society and its reactions to people who differ from the “genetic norm” that needs to be changed, not the differing individuals. It is not clear why this should be thought to follow. In our society inability to read is, let us suppose, a socially constructed disability. Suppose we could make everyone read using moderate resources, and that a society in which inability to read was not a disability would be in many respects much worse than ours. Why should we prefer, morally speaking, the latter option? The more general point is that it is unclear why, from the point of view of justice, a society in which people are different in various respects would be preferable to a society in which each of us is well off to the same extent but there is less human heterogeneity.
In his contribution, Nikolaus Knopffler embraces the Kantian idea of human dignity and treats it as the fundamental principle of bioethics. Roughly, in his view this idea implies that, whereas somatic gene therapy is morally unproblematic, germ-line gene therapy and germ-line enhancement are morally unacceptable. Knopffler does not explain why, exactly, this follows. At one point he seems to suggest that the fact that we have no common grounds for determining which enhancements are desirable implies that enhancement violates the Kantian principle, but such irresolvable disagreements simply seem beside the point.
In an interesting article, Christian Munthe convincingly argues that there is no morally relevant difference between genetic interventions involving the treatment of a particular individual and genetic interventions involving the exchange of one possible future person for another. Examples of the latter sort of intervention include the preselection of embryos based on preimplantation genetic diagnosis.
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