2 of 2 people found the following review helpful:
4.0 out of 5 stars
Re-Thinking our Obsession with Genetics, July 30, 2001
I bought this book after hearing Lori speak at a forum at the University of Washington. While this is a book primarily about public policy (what our government should do about making laws covering genetic testing), it covers all aspects of genetics, from a history of genetic testing to the ways in which genetic testing information have been used and abused in our society. I came away worried about our future but hopeful that we could use the new information that genetic testing provides, without considering it the end of the line. Genetics are one piece of information that need to be considered along with ethics, other medical information, and personal beliefs.
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3.0 out of 5 stars
Half of an in-depth look at genetic testing and its implications, February 14, 2009
In this stilted, somewhat repetitive work, Lori Andrews tells us that we need to choose among three models for dealing with genetic testing: the medical model, the public health model, and the fundamental rights model. In truth, however, she seems to be arguing for a fourth model: no genetic testing at all. For Andrews, it appears that no good can come of it. I am left with the feeling that underlying the practical problems, she has an unacknowledged philosophical objection to genetic testing and its medical implications. I would agree with her fundamental rights model because of its emphasis on voluntary decisions, but I fail to see how it necessarily produces better quality.
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.
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