Customer Reviews

Heredity and Hope: The Case for Genetic Screening

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I think Ruth Cowan's book is great! It is amazingly well written, clear, and deep without getting ensnared in unnecessary detail. Its deceptively easy to read while being thought-provoking and insightful. The summary of the history of both eugenics and (human) genetics is all that people ever need on that whether they are non-historians or experts. She's also helpful on amniocentesis, prenatal diagnosis, termination of pregnancy, and lots of other important topics that have yet to be fully defined and explored by historians. I found particularly useful the concise definitions of the various overlapping scientific and social fields in the history of human reproductive biology. As a history of medicine PhD candidate at another university and researcher in the same field, I consider her book to be just about perfect. It has joined my personal very short list of the best history of medicine books ever. Buy it now and you will not regret it.

In this extensively researched and well-written book, Cowan explores the history of genetic testing, paying particular attention to the meaning of genetic testing to those who developed it and those who experienced it. In doing so, Cowan deftly undermines the arguments made by opponents of genetic screening who see the technology as inexplicably linked to the eugenics movement, who see it as a form of discrimination against the disabled, and who see the routinization of prenatal genetic testing as an example of a paternalistic medical profession diminishing women's autonomy.
Instead, Cowan shows that for the researchers and physicians who developed prenatal genetic testing, their motives were pronatalist: these developers sought to reduce the number of unnecessary abortions being performed on fetuses at risk of being afflicted with a life-threatening genetic disease by providing parents with definitive information about the genetic (and thus disease) status of their fetus. In doing so, the developers of genetic testing and advocates of genetic screening were committed to reducing the amount of human suffering experienced by the children and families affected by fatal genetic conditions.
Cowan shows clearly how individuals and couples at-risk of passing on genetic diseases to their children and the parents of children born with fatal genetic diseases have been some of the biggest proponents of genetic screening, raising money, supporting research, and lobbying federal governments to provide more support for genetic screening. Cowan argues that for governments to limit at-risk individuals' access to genetic screening is itself paternalistic, and makes the convincing case that genetic screening (in the form of prenatal testing, newborn testing, and carrier testing) for such fatal diseases as sickle cell anemia, thalassemia, phenylketonuria, and Tay-Sachs disease is at once morally right and politically acceptable.
Heredity and Hope is an important book for anyone interested in the subject of genetic testing but especially for expectant parents considering prenatal diagnosis, individuals considering being tested for their carrier status, and physicians and policymakers who continue to debate the ethics of genetic screening.

Ruth Schwartz Cowan's book is well written and exceptionally insightful. She makes a strong argument for allowing families to make informed decisions when there is the risk of having a child with a devastating disease.

This book is a thoughtful examination of the emergence of genetic screening as a method to reduce profound human suffering. It is certainly not an argument for using genetic screening to eliminate undesirable individuals or to avoid the challenges of life with a manageable disease. It does provide solid background and support for the widely held belief that until definitive therapies or cures are available, genetic screening provides the best method for allowing families to make informed decisions about how to deal with devastating diseases.

"Heredity and Hope: The Case for Genetic Screening" not only shows why genetic screening should be adopted as a means to reduce the frequency of new cases of debilitating and fatal diseases, it also explains how genetic screening is the key to helping at-risk individuals have healthy children.

Ruth Schwartz Cowan's research is thorough, her conclusions are sound, and her advice should be taken to heart. A comprehensive genetic screening effort, properly managed and administered, will reduce human suffering and will increase the likelihood that children will be born with the best possible chances for survival.

Ruth Schwartz Cowan's "Heredity and Hope" rejects classic eugenics with its lofty goal of "improvement of the race" and instead advocates a new micro-eugenics with a smaller, more selfish chief goal: protecting the comfort and independence of the parents of children prenatally diagnosed with genetic abnormalities by ending the life of the child.

Dr. Cowan eagerly advocates 21st century genetic testing, prenatal diagnosis, and pregnancy termination, yet clings to an outdated and discriminatory early 20th century view of those with disabilities, calling those with Down Syndrome "chronically dependent" and "suffering."
I'd like Dr. Cowan to meet Karen Gaffney, the remarkable woman with Down Syndrome who recently swam the nine miles across Lake Tahoe. And I'd like her to meet Sujeet Desai, a musician who plays six instruments, and his wife Carrie Bergeron, a community college graduate and national speaker; both have Down Syndrome. And I'd like her to meet my son Caedon, age 2, who experiences advantages in medical treatment, developmental therapies, and educational inclusion that were unavailable to children with Down Syndrome even a decade ago. We've yet to see what great things Caedon and others of his generation will contribute to society given these new advantages.

Far removed from the forced institutionalization of earlier generations, many people with disabilities now live meaningful and increasingly independent lives. Life is indeed challenging for those with Down Syndrome and other genetic abnormalities and for their families, and I am thankful for the advances that allow this increased achievement and independence. Further, I welcome additional advances in medical genetics that will cure or reduce the severity of these abnormalities.

We should all reject Dr. Cowan's outdated and discriminatory view that death is the appropriate outcome for those with prenatally diagnosed genetic abnormalities.