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Edited by Ronald A Carson and Mark A Rothstein, Baltimore and London, The Johns Hopkins University Press, 1999, 206 pages, £33.00.
This book is a collection of essays on recent findings in behavioural genetics and on the appropriate ethical, social and legal reactions to these findings. The authors come from various fields. The collection does not attempt to answer systematically all the questions it raises, but I believe that the book might be of some use in attempting to systematise and analyse the ethical problems in this area.Journal of Medical Ethics 2001;27:68–71
Behavioural genetics is not in itself a new field of research. We are painfully aware of the claims made for the existence of genetic factors in behaviour throughout the twentieth century. “Eugenics” is today charged with very negative feelings, and there is a risk that any claim by modern scientists about a genetic basis for behaviour, such as intelligence, will arouse these feelings. This happened when Herrnstein and Murray, in The Bell Curve (1994), claimed that there is a racial variation in the genetic component of intellectual capacity and made controversial claims on this basis. This is a fitting illustration of the need to do precisely what the authors are trying to do in the present book, namely “standing back in contemplation” (page x) about the place of behavioural genetics in today's and tomorrow's society.
What is new in modern behavioural genetics? First, scientists are able to identify with greater precision, genetic links to alcoholism, criminality, thrill seeking, aggression, sexual orientation, Huntington's disease, schizophrenia, dyslexia, anxiety and so on. Second, the potential to identify the particular genes or gene complexes that lie behind behaviours and diseases looks likely to increase rapidly, thanks in large part to the Human Genome Project. Third, with increasing gene identification will come the increasing possibility of gene therapy.
Many of the questions concerning how to handle this new technique have important ethical dimensions. Here, by means of example, I just want to mention some of the ethical problems that the second point about gene identification raises.
I believe the central question here is what kind of genetic knowledge we want to have. There may be an instrumental value in knowing what will enable us to cure antisocial behaviours and diseases; but what is the value—apart from being a prerequisite for a future cure—of identifying genes that lie behind traits, behaviours and diseases that cannot be changed or cured? According to Allan J Tobin, in this volume, the enthusiasm for seeking this knowledge seems to be higher among people for whom the information is abstract, compared to people for whom it is immediate: “For physicians, genetic tests are like any other diagnostic tool, but for people at risk, they lead literally to life-and-death decisions. In one case, for example, a genetic diagnosis for Huntington disease, delivered over the telephone, was the immediate stimulus for suicide” (page 3).
In some cases there may be a positive value also, for the most immediately affected. David C Rowe and Kristen C Jacobson claim that the findings on schizophrenia have been welcomed as a release for the parents and particularly for the mothers, who no longer have to blame themselves “for fostering the illness in their children by their supposed emotional coldness and inconsistent discipline” (page 14). But in this regard there is a slight tension in this book between different contributions. For the book ends with Troy Duster's chapter, which emphasises the danger that genetic test results might lead to the blaming of parents as the genetic source of their child's disease—children sometimes refer to their genetic disease as something their parents gave them—and I fear that this question of guilt and blame will be even more important in the future, also as far as schizophrenia is concerned. Provided that no cure is found for this disease, may not parents in the future who knew they had the gene for schizophrenia have to explain why they brought children into the world?
These questions and many others could do with a more systematic treatment than is the case here, but once again, that is not the ambition of this particular volume.