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Copyright Date: 2008
Published by: Harvard University Press
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  • Book Info
    Book Description:

    Neither minimizing the difficulty of the choices that modern genetics has created for us nor fearing them, Cowan 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.

    eISBN: 978-0-674-02992-7
    Subjects: Health Sciences, Public Health, Ecology & Evolutionary Biology

Table of Contents

  1. Front Matter
    (pp. [i]-[vi])
  2. Table of Contents
    (pp. [vii]-[x])
  3. Introduction
    (pp. 1-11)

    In the late summer of 1979, I found myself lying on a gurney in a hospital, four months pregnant and very, very uncomfortable. I had just consumed eight liters of water, which, I was told, would make it easier for a doctor to “see” (with something called an ultrasound device) the baby that was growing in my uterus, so that some kind of test could be “performed” safely. I was thirty-eight; the nurse-midwife to whom I went for prenatal care had told me that, given my age, I was at increased risk of having a baby with Down syndrome and...

  4. CHAPTER 1 Many Varieties of Beautiful Inheritance
    (pp. 12-40)

    In the early decades of the twentieth century eugenics was both a science, pursued by people who worked in laboratories, and a social movement, pursued by people who wanted governments to create new policies and new legislation. Today, many knowledgeable people regard the scientific part of eugenics as fraudulent, but no one denies that as a social movement it was, for a time, both popular and effective. Indeed, much of the current opposition to genetic testing and genetic screening depends on the memory of what eugenicists once believed in and the governmental policies that were motivated by those beliefs.


  5. CHAPTER 2 Eugenics and the Genealogical Fallacy
    (pp. 41-70)

    Late in the winter of 1901 a British physician, Archibald Garrod, began an exchange of letters with a British biologist, William Bateson. Although neither man could have known it at the time, those letters—plus the two articles and a book which they published within the year—represent the origin of the discipline that is today called medical genetics. Garrod and Bateson had a lot on their minds during the winter and spring of 1901; each was trying to solve a puzzle to which the other held a crucial clue.¹

    Medical geneticists are the people who develop, administer, and evaluate...

  6. CHAPTER 3 Pronatal Motives and Prenatal Diagnosis
    (pp. 71-116)

    Many medical professionals are known by the technologies they use: surgeons by their knives, dentists by their drills, pathologists by their microscopes. Indeed, some medical specialties owe their very existence to technologies. Where would anesthesiology be without anesthetics, or radiology without X-ray tubes and ultrasound machines? Genetic tests are the technologies that have helped the field of medical genetics grow. There were physicians, like James Neel at the beginning of his career, who practiced medical genetics before there were genetic tests, but their numbers were small and their influence barely detectable; the best they could hope to do for individual...

  7. CHAPTER 4 No Matter What, This Has to Stop!
    (pp. 117-149)

    Sometimes memories of traumatic events can be manipulated for political purposes, but sometimes immediate experience can trump memory. This is precisely what happened when newborn genetic screening (for phenylketonuria) and adult carrier screening (for Tay-Sachs disease) were first introduced. A visitor from Mars who knew something about the history of the Nazis might have expected both of these screening programs to be very controversial: the first because it was done under governmental mandate and violated the ethical norm of informed consent; the second because it was focused on the community that had suffered the worst abuses of Nazi eugenics, Ashkenazi...

  8. CHAPTER 5 Genetic Screening and Genocidal Claims
    (pp. 150-180)

    The story of sickle-cell disease screening in the United States is a story of failure. Unlike newborn screening for PKU and carrier screening for Tay-Sachs, carrier screening for sickle-cell disease has never been institutionalized in the United States; there are no governmental or private organizations devoted to it; the national advocacy association, the Sickle Cell Disease Association of America, does not support it (not on its website, at least); there are no special allocations of governmental funds to sustain it. To make matters worse, at least from the perspective of medical geneticists, the controversies that erupted in the 1970s over...

  9. CHAPTER 6 Parents, Politicians, Physicians, and Priests
    (pp. 181-222)

    However effective genetic screening may be at preventing serious diseases, very few recent governments have been willing to mandate it. Governments sometimes require quarantines, to prevent the spread of epidemic disease, and they often require immunization, to prevent the appearance of diseases which might become epidemic—but they usually do not require genetic screening, even though it might be just as effective a way to reduce the toll that illness takes on a population. No government official wants to go down in history as advocating something the Nazis once advocated; no government, especially a government elected after World War II,...

  10. Conclusion
    (pp. 223-246)

    The Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine was promulgated, with great solemnity, by all the member states of the European Union, on April 4, 1997.¹ The European Parliament had asked teams of doctors, scientists, philosophers, theologians, lawyers, bureaucrats, and politicians to come up with guidelines for implementing such new and troubling technologies asin vitrofertilization, genetic screening, and organ donation. These thoughtful people deliberated long and hard, but despite all their efforts, the agreement that they drafted, and that all the member states...

  11. Notes
    (pp. 247-268)
  12. Further Reading
    (pp. 269-276)
  13. Acknowledgments
    (pp. 277-280)
  14. Index
    (pp. 281-292)