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Heredity and Hope: The Case for Genetic Screening
 
 
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Heredity and Hope: The Case for Genetic Screening [Hardcover]

Ruth Schwartz Cowan (Author)
3.8 out of 5 stars  See all reviews (4 customer reviews)

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Book Description

0674024249 978-0674024243 May 20, 2008 1

The secrets locked in our genes are being revealed, and we find ourselves both enthused and frightened about what that portends. We look forward to curing disease and alleviating suffering—for our children as well as for ourselves—but we also worry about delving too deeply into the double helix. Abuses perpetrated by eugenicists—from involuntary sterilization to murder—continue to taint our feelings about genetic screening.

Yet, as Ruth Schwartz Cowan reveals, modern genetic screening has been practiced since 1960, benefiting millions of women and children all over the world. She persuasively argues that new forms of screening—prenatal, newborn, and carrier testing—are both morally right and politically acceptable. Medical genetics, built on the desire of parents and physicians to reduce suffering and increase personal freedom, not on the desire to “improve the human race,” is in fact an entirely different enterprise from eugenics.

Cowan’s narrative moves from an account of the interwoven histories of genetics and eugenics in the first half of the twentieth century, to the development of new forms of genetic screening after mid-century. It includes illuminating chapters on the often misunderstood testing programs for sickle cell anemia, and on the world’s only mandated premarital screening programs, both of them on the island of Cyprus.

Neither minimizing the difficulty of the choices that modern genetics has created for us nor fearing them, Cowan bravely and compassionately argues that we can improve the quality of our own lives and the lives of our children by using the modern science and technology of genetic screening responsibly.

(20080522)

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Editorial Reviews

Review

Ruth Cowan, an unabashed supporter of genetic screening and prenatal diagnosis, explains how they have enabled parents at risk to have children free of debilitating or deadly genetic diseases. She is a masterful and altogether convincing guide.
--Daniel Kevles, Yale University

Elegantly written and thoroughly researched, Ruth Schwartz Cowan's wisdom shines forth on every page of this critically important book.
--Dr. Howard Markel, author of When Germs Travel

Cowanadeptly and persuasively shows why the normative foundation for contemporary genetic screening is sound, why it should not be tarred with the brush of racist eugenics and where the real challenges and conundrums lie for those involved in screening now and in the future.
--Arthur Caplan, Director, Center for Bioethics at the University of Pennsylvania

Passionate, well-researched, and controversial, Heredity and Hope provides important historical illumination on an issue which activists and analysts from many perspectives will be eager to address.
--Rayna Rapp, author of Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America

Modern healers may claim science to be the foundation of their work, but the key is, in fact, persuasion: to heed advice, to push and persevere, to hope. As the genome is further dissected and better understood, no family of diseases warrants more genuine hope for successful management than genetic conditions. Cowan understands that we must all share that hope for the campaign to be successful.
--Hugh Young Rienhoff Jr. (Nature )

About the Author

Ruth Schwartz Cowan is Professor of History and Sociology of Science, University of Pennsylvania.

Product Details

  • Hardcover: 304 pages
  • Publisher: Harvard University Press; 1 edition (May 20, 2008)
  • Language: English
  • ISBN-10: 0674024249
  • ISBN-13: 978-0674024243
  • Product Dimensions: 8.4 x 5.5 x 1 inches
  • Shipping Weight: 15.2 ounces (View shipping rates and policies)
  • Average Customer Review: 3.8 out of 5 stars  See all reviews (4 customer reviews)
  • Amazon Best Sellers Rank: #1,022,219 in Books (See Top 100 in Books)

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Average Customer Review
3.8 out of 5 stars (4 customer reviews)
 
 
 
 
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2 of 2 people found the following review helpful:
5.0 out of 5 stars Awesome!, January 20, 2009
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This review is from: Heredity and Hope: The Case for Genetic Screening (Hardcover)
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.
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1 of 1 people found the following review helpful:
5.0 out of 5 stars Making the case for genetic screening, September 28, 2008
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This review is from: Heredity and Hope: The Case for Genetic Screening (Hardcover)
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.
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1 of 2 people found the following review helpful:
4.0 out of 5 stars Reducing Suffering Through Genetic Screening, August 16, 2008
This review is from: Heredity and Hope: The Case for Genetic Screening (Hardcover)
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.
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Inside This Book (learn more)
Key Phrases - Statistically Improbable Phrases (SIPs): (learn more)
thalassemic babies, reproductive feminists, genealogical fallacy, amniotic tap, sickling hemoglobin, thalassemic children, premarital screening, family idiocy, mandated screening, thalassemic patients, fetal indications, medical geneticists, germinal choice, prenatal diagnosis, carrier screening, disability rights activists, fetal diagnosis, human cytogenetics
Key Phrases - Capitalized Phrases (CAPs): (learn more)
New York, United States, World War, Greek Cypriot, Johns Hopkins University Press, Turkish Cypriot, James Neel, Ashkenazi Jews, Michael Angastiniotis, Northern Cyprus, Francis Galton, Fritz Fuchs, Journal of the National Medical Association, Archibald Garrod, Harvard University Press, Allan Fawdry, William Bateson, Minas Hadjiminas, Eugenics Record Office, Karl Pearson, Jérôme Lejeune, Greek Cyprus, Ruth Dunkell, Further Reading, Cypriot Orthodox Church
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