Journal of Heredity 2004:95(3):272-272
© 2004 The American Genetic Association
Book Review |
Designing Our Descendants: The Promises and Perils of Genetic Modifications
Edited by A. R. Chapman and M. S. Frankel.Johns Hopkins University Press, Baltimore. 2003. 384 pp. $32.00.
This book is all about the genetic modification of our genome, whether it should be done at all—not only whether the research should be supported by the National Institutes of Health (NIH) or the government, but whether this type of research should proceed at all. The authors generally take no personal stand on the issue—they present in meticulous detail what the issues are, what consequences may ensue immediately, and what the long-range prospects are if society chooses to continue with genome alteration research. It is, of course, something done in many animal species already, but should it be extended to human genes.
The book is really a presentation to society, and the hope is expressed that by examining the important and wide-ranging issues of genetic modification, society will not only be better informed, but also will be capable of participating more intelligently in the decision making that is before us. Twenty-one authors of different disciplines participated in a wide-ranging study conducted by the American Association for the Advancement of Science (AAAS), which summarizes in great detail, and for the most part with clarity, these complex technical and philosophical, as well as religious and judicial, issues. I must say that, having read all of the pros and cons, my mind has not been changed regarding the wisdom of genetic engineering, but the consequences of such action have become clearer, and my understanding of what is at stake has been extended. The principal controversy, of course, concerns inheritable genetic modification (IGM), and the AAAS study concluded that "the use of IGM to prevent and treat clear-cut diseases in future generations is ethically justifiable." But there are numerous provisos that must be weighed in some detail. Thus, what sort of therapy is acceptable—introduction of genes with a virus vector or oligonucleotide substitution? Should it be done on germ cells, on stem cells, and what methods are generally now available and what methods can be anticipated to be developed? There are two chapters that present in great clarity the technical aspects that need to be understood and how the cell therapy will be exercised. I should say that the book bristles with abbreviations such as IGM, ESCs, HER, IND, IVF, and so on. Actually this is an important point, as the consequences deriving from these various techniques differ widely, and when reading the chapters, one must be absolutely clear what these abbreviation actually mean and what they imply.
Research has come a long way in modifying the DNA of defective stretches and it is likely to become even more competent. One can probably anticipate that vectors will not be needed in the future, let alone artificial chromosome introduction. So what is the hesitancy then for the modification of defective genes in germ cells or somatic cells? Safety, of course, is the first concern; can abnormal results be completely avoided (thus preventing the need for therapeutic abortion) and what chances of success might be achieved? So far the modification of defective genes does not come close to 100%. Perhaps that will improve and may justify reason enough to press ahead with research. But even if successful in all respects, who will benefit, and on what genetic disorders will the therapy be practiced? Offhand we are pretty certain that we know enough single-gene disorders to justify this therapy, don't we? When you read on, however, it becomes clear that there is only a very small number of such curable conditions and that the great effort of this work will have precious little return, numerically speaking. But are we not morally compelled to seek effective therapy for those afflicted?
But then there is the problem of "distributive justice." The detailed examination of that principle alone was eye-opening for me and it should be of interest to readers. Who will have access to IGM and, for that matter, which diseases will be researched? These are knotty problems that are well researched in this book, but for which it is much harder to anticipate a socially acceptable solution.
But given a clear mind about all of these therapeutic and ethical arguments, and suppose we can all agree that gene replacement therapy is safe and practical, a major hurdle then needs to be overcome—are we to allow (or for that matter, how can we prevent) the insertion of "desired" genes? In other words, will it lead to eugenics of one sort or another? Of course, society should be well informed before new laws are passed or before the genes of our descendants are modified at all. Inasmuch as single nucleotide polymorphism (SNP) variations are very frequent in us and can be used to stratify man into different populations (yes, "races"), what is the wild type that will be used for repair or, from the view of insurance companies, who will be insurable? Aspects of these oft-discussed futuristic societal horrors are clearly discussed and, with reason, some suggestions for possible acceptance are also presented.
This is a thoughtful book; not a bestselling, captivating read, but one that certainly physicians and geneticists need to read and one that should be a "resource," as the editors suggest, especially for policymakers. Yes, and "cloning" is also considered, and not in very favorable terms I might add. The final chapters are "Recommendations for Policy" and a proposal for a consent form to participate in a study of IGM. The latter will be in fine print, no doubt, as the ramifications are so great that it is a long protocol—but obviously needed as well.
Department of Pathology UCSD Medical Center 200 W. Arbor Dr. San Diego, CA 92103
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