Future Perfect: Confronting Decisions About Genetics 平装 – 2002年8月14日
Andrews urges us to face the psychological havoc already being wrought us as, with a few probes into our DNA, a doctor can tell us what genetic diseases may lie in store for us, our families and our fetuses. Chicago Tribune Compelling reading... very useful... intriguing. American Scientist Biotechnology expert Andrews clearly establishes that genetics will change all of our lives in the future-and this change may not necessarily be a positive one... Useful to anyone who is now or will be involved in some aspect of genetic testing. All levels. -- R. G. McGee Jr. Choice Andrews, a world renowned expert on genetic and reproductive technology, provides a fascinating look here at genetic screening... Andrews's legal insight and her ability to look beyond the superficial issues provide a breath of fresh air. Library Journal Future Perfect is most interesting for its explicit focus on the need to find the most appropriate conceptual model for assessing the new genetics... Very readable... based on wide knowledge. Nature This book is important for at least two reasons. First it explores the promises and challenges of the new genetics with comprehensive yet exceptionally readable commentary. Second, it sounds a clarion call to alert us to what Lori Andrews suggests is 'over-promising in genetics' and so to mobilize us in 'combating genetic hubris.' America [Andrews'] unique work clearly makes the case for the need for further development in the project she has initiated with this book. -- Pia de Solenni The National Catholic Bioethics Quarterly
Lori Andrews has been an adviser on genetic and reproductive technology to Congress, the World Health Organization, the National Institutes of Health, the Centers for Disease Control, the Department of Health and Human Services, the Institute of Medicine of the National Academy of Sciences, and several foreign nations including the emirate of Dubai and the French National Assembly. She is the author of nine books, including The Clone Age: Adventures in the New World of Reproductive Technology. A professor of law at Chicago-Kent College of Law, she is director of the Institute for Science, Law and Technology and Senior Scholar, Center for Clinical Medical Ethics at the University of Chicago.
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This book is useful and laudable for a thorough examination of problems and issues to be considered if we are to use genetic testing and counseling. Some of them are frightening. Tests can be unreliable, more people will have worrisome knowledge that is not useful, or have bad psychological reactions of feeling stigmatized or unworthy. In some cases, Andrews seems to go a little far, arguing that aborting or averting the conception of children who will be disabled is a slap in the face to the living disabled. Perhaps she would like pregnant women to take thalidimide, or like us all to become voluntary quadroplegics so as to make disabilities the norm? There are already those who object to certain amelioration of disabilities, so as hearing aids and cochlear implants, on the grounds that it denies that identity of the disabled person and implies that the disability makes them less valuable.
Some of the problems, like failures of medical confidentiality, denial of medical benefits, etc., are certainly serious problems, but they exist with or without genetic testing. And it is possible that if genetic testing made them more common, they would be viewed with more concern, and more effort made to deal with them.
If we are going to make good decisions, we need to know the potential problems, but we cannot make an informed decision without knowing benefits as well as the present problems. Andrews apparently doesn't see any. Whenever she seems to be on the brink of something positive, she dismisses it or changes the subject as fast as possible. She tells us that ten percent of people who test negative for Huntingdons require psychological counseling, without discussing how many people, knowing that they have a fifty-fifty chance of inheriting the disease need help, let alone reflecting that ninety percent do not need help. She also does not consider, with some of her examples, that the reaction of the subjects might have been different if the test had been available earlier in their lives. Some people, not knowing, had lived their lives as if they had it; finding that they didn't require lifestyle adjustments or having regrets (over not having had children, for example.) But those seem likely to be the very people who might have chosen the test and so lived differently.
Andrews worried, for example, about the problem of unwelcome knowledge within a family. If one person gets a test, and the results get out, other relatives will have the potentially unwelcome knowledge that they may have the same hereditary problem. That problem has existed ever since humanity noticed that some illnesses and conditions run in families. Guilt and resentment between relatives who do or do not have a condition, or inheritance of a hereditary problem existed long before genetic tests. Andrews cites the case of a couple who, finding that a fetus was going to have cystic fibrosis, called their family together to discuss the issue. Some relatives resented the possibility that the couple and their child might get an unfair amount of the family's resources. Would the situation have been different if the child had been born with the disease without forewarning?
Andrews tells us that people may feel stigmatized, but again, this is not a new problem with genetic testing, only a more common one. And perhaps the very commonness would be a good thing, the realization that virtually everyone has genetic multiple genetic anomalies would make us more compassionate and supportive of one another.
Andrews also does not really weigh whether or not particular problems can be dealt with. I am left with the feeling that she doesn't want solutions, since she apparently doesn't want testing at all.
This book has very valuable insights into problems of genetic testing, but is by no means a thorough or adequate consideration of the subject.