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Future Perfect

Future Perfect: Confronting Decisions About Genetics

Lori B. Andrews
Copyright Date: 2001
Pages: 288
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  • Book Info
    Future Perfect
    Book Description:

    Genetic technologies have moved off the pages of science fiction and into our everyday lives. Internists now offer genetic testing for cancers and early coronary disease. Obstetricians make genetic predictions during pregnancy about a baby's future health. Even dentists are getting into the act, offering testing for a genetic propensity to peridontal disease. In this pathbreaking book, Lori Andrews provides the first detailed glimpse into how genetic testing can change your self-image, your relationships with loved ones, and your expectations about your children. She documents how ill prepared doctors are to deal with complex genetic issues. Andrews also uncovers the ways in which employers, insurers, schools, and courts have discriminated against people on the basis of their genetic make up. She traces the legal case history of genetics litigation and legislation and describes the ethical and social protections that need to be in place so that the Human Genome Project does not lead us directly toward Brave New World.

    In Future Perfect, Lori Andrews offers a new plan for making decisions as individuals and as a society based on emerging issues of ethics and science. Who should have access to your personal genetic information? Should genetic treatments be used to enhance characteristics such as intelligence in "normal" individuals? Should gene therapy be undertaken on embryos, changing their genetic inheritance, as well as that of future generations? If a woman learns she has a genetic mutation predisposing her to breast cancer, does she have a moral or even a legal duty to share that information with an estranged relative? Andrews considers the answer to these and many other questions that have profound implications for health care providers, medical organizations, social institutions, legislatures, courts, and ordinary people.

    eISBN: 978-0-231-50248-1
    Subjects: Political Science, Law, Ecology & Evolutionary Biology, Health Sciences

Table of Contents

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  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-x)
  3. Acknowledgments
    (pp. xi-xiv)
  4. 1 Genetics Enters Our Lives
    (pp. 1-14)

    On a crisp fall day in 1995, Francis Collins, head of the Human Genome Project at the National Institutes of Health, took the microphone at a press conference he had convened. He announced that he and colleagues at Hebrew University in Jerusalem and at the University of California, San Diego, had discovered a mutation in a breast cancer gene in Ashkenazi Jewish women—the 185delAG mutation—that put them at higher risk than other women for developing breast and ovarian cancer.¹

    The efforts to discover genetic causes for breast cancer preceding that announcement could be presented as a scientific adventure...

  5. 2 Competing Frameworks for Genetics Policy
    (pp. 15-30)

    Genetic technologies raise issues that cut to the core of what it means to be human and what it means to be a just and fair society. Yet the significance of those technologies has not been addressed in a systematic way by policymakers in the United States. Instead, a chaotic series of pronouncements by various agencies, medical organizations, health care institutions, and legislatures has addressed narrow issues or isolated subcategories of genetic technologies. The result has been unnecessary duplication of effort, conflicting guidelines, and specialized policies that can cause harm when inappropriately applied more widely.

    The United States notably lacks...

  6. 3 The Impact of Genetic Services on Personal Life
    (pp. 31-55)

    Genetic testing generates information unparalleled in other areas of medicine. People can learn that, decades later, they will suffer from an untreatable disorder. People can learn that they have an increased risk of cancer—or that their children have a one-in-four chance of dying of a serious disorder in childhood. The impact of this profound knowledge ripples throughout people’s lives—challenging their self-image, changing their relationships with family and friends, and causing them to think about their life, health, and responsibilities in new ways.

    Learning predictive genetic information about themselves can cause people to view themselves differently. Genetic testing—offering...

  7. 4 The Changing Face of Parenthood in the Genetics Era
    (pp. 56-76)

    Genetic services, like most medical services, affect people profoundly as individuals. But they also affect people as members of couples and as parents of children. The central tenet of genetics—inheritability—adds even more difficult and complicated issues as people make decisions not only for themselves but for future generations.

    Family history has long been used to predict a couple’s general chance of giving birth to a child with a particular disorder. Starting thirty years ago with the advent of prenatal diagnosis through amniocentesis, specific genetic information about fetuses became available to parents. Today genetic information related to reproduction is...

  8. 5 The Impact of Genetic Services on Women, People of Color, and Individuals with Disabilities
    (pp. 77-106)

    Genetic services affect people as individuals, but they also affect people as members of groups. Past eugenic practices disproportionally disadvantaged women, people of color, and individuals with disabilities. In trying to create contemporary policies to deal with genetic services, it is useful to understand that history and to analyze the ways in which contemporary health care and genetics practices affect those groups.

    Genetic services do not just affect the individual women who use them. They also shape society’s expectations of women in general. Genetic services can exacerbate disparities in health care research and clinical services involving women.

    In the past,...

  9. 6 Problems in the Delivery of Genetic Services
    (pp. 107-129)

    Genetic tests and treatments are so rapidly entering the clinical arena that physicians may not have sufficient expertise to assess their worth. In addition, certain unique features of genetic testing make it more difficult to assure the quality of genetic services, yet patients and policymakers may not be aware of that fact. And the close ties between biotechnology companies and university and government genetics researchers mean that there are few scientists in this field who do not have a financial conflict of interest when it comes to assessing the validity of and need for genetic services.

    What are the appropriate...

  10. 7 The Impact of Genetics on Cultural Value and Social Institutions
    (pp. 130-150)

    Genetic information has the potential to change the nature of our social fabric by influencing our ideas about individual and social responsibility and by challenging basic societal concepts such as free will and equality. If most people choose to have prenatal diagnosis and abort fetuses with certain disabilities, society may be less willing to provide services to people with those types of disabilities, viewing them as having erroneously slipped through the net of prenatal screening. Already, some physicians and lawyers are claiming that people should have a duty to learn their genetic status and make lifestyle choices—where to live,...

  11. 8 Which Conceptual Model Best Fits Genetics?
    (pp. 151-178)

    The impacts of genetic technologies are profound. Genetic services can cause psychological, physical, and financial risks to individuals. They can create new forms of discrimination and exacerbate unfair treatment of women, people of color, and people with disabilities. Current mechanisms do not provide sufficient protection for individuals and groups who are offered, undertake, or attempt to refuse genetic services. Appropriate protection would require that extensive attention be paid to voluntariness, informed consent, control of the dissemination of genetic information, quality assurance, and minimizing the potential risks of genetic technologies.

    The empirical data on the impacts of genetic testing provide the...

  12. Notes
    (pp. 179-248)
  13. Index
    (pp. 249-264)