Medical genetics : a legal frontier / by Lori B. Andrews.

  • Lori Andrews
Date:
1987
Catalogue details

Licence: Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)

Credit: Medical genetics : a legal frontier / by Lori B. Andrews. Source: Wellcome Collection.

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    INTRODUCTION AND ACKNOWLEDGMENTS When the technology of celestial navigation was first systematized by Henry the Navigator, humankind did not know where their ships, so guided, would travel. Similarly, the newly discovered road map to life itself will undoubtedly lead us to new worlds of which we now have no knowledge/ In the 1950's, the location and number of the human chromosomes were first discovered. Since that time, scientists have been uncovering more and more details of our genetic heritage. They have begun mapping, one by one, the thousands of genes on the chromosomes to determine what effects these genes have on our bodily processes. It is anticipated that the human gene map will be completely defined in the next five years.'^ This knowledge, as well as indirect observations of the origins and effects of genetic diseases, has further been used in the development of diagnostic tests and treatments for human disorders. Throughout this process, the law has influenced medical genetics. The law has acted like a wind buffeting an exploring ship. Sometimes the law has pushed genetics along—for example, through legislative enactments encouraging genetic research or genetic screening and through lawsuits for wrongful birth stimulating the provision of genetic information and ser¬ vices to potential parents. At other times, the law has restrained certain aspects of genetics—as in the case of the two federal moratoriums on fetal research and in the law's lack of clarity at certain points about the approp¬ riate use of certain treatments such as organ transplantation or gene therapy. This book is intended to provide an analysis of the law for people who work in the medical genetics field and related health care fields, including researchers, clinicians, paraprofessionals, and public health officials. Many of you have felt the winds of law without fully understanding their rationales and implications. This book presents an overview of the laws affecting your work. Since people will come to this book with varying degrees of familiarity about law. Appendix A provides background information about how the legal system functions. As in medical practice, genetics creates a new fron¬ tier for the law. Consequently, it is sometimes difficult to answer even the simpliest questions about what the law is regarding a particular facet of genetics. Just as a genetic counselor must deal with probabilities and pre¬ dictions, a legal counselor in this brave new field cannot forecast precisely how the law will evolve. This book was made possible by research grant MCJ-170500 awarded by the Division of Maternal and Child Health, U.S. Department of Health and Human Services. The people in that division have been at the forefront of policies to facilitate appropriate applications of genetic research and
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