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39 Emory L. J. 747 (1990)
Ethics, Law, and Medical Genetics: After the Human Genome is Mapped

handle is hein.journals/emlj39 and id is 761 raw text is: ETHICS, LAW, AND MEDICAL GENETICS: AFTER THE HUMAN GENOME IS MAPPED John C. Fletcher* Dorothy C. Wertz** INTRODUCTION In modern health care, duties grounded in an ethical principle of re- spect for persons can only be made real and carried out in communities of persons where respect prevails. These duties include: a) a prima facie (but not absolute) duty to respect and to protect the autonomous choices and privacy of competent persons, and b) a duty to respect and protect persons whose reasoning is impaired, who have permanently lost the capacity to participate in decisionmaking, or who have never had such capacity at all, for example, seriously retarded or disabled persons, or patients in states of permanent unconsciousness. These impaired and incapacitated human be- ings are extremely vulnerable except when encompassed within communi- ties of persons and accorded the respect which all persons are due. In modern societies - marked by loss of communities in which to nur- ture persons, their relationships, and their moral duties - the gap be- tween the ideal described by the duties and actual practice is often very large. How can individuals who are essentially strangers to one another in medical encounters actually discover, learn, and perform such duties? The pace of massive technological change exacerbates the gap, bringing us to the point of this Article. When the human genome is mapped, what will become of the specific duties of respect for and protection of the autonomous choices and privacy of persons, and respect for and protection of vulnerable human beings who are, or will become, incapacitated to express autonomous choices? Will such duties survive intact? Or will they be diminished and disappear * Professor of Biomedical Ethics and Religious Studies, University of Virginia. ** Research Professor, Health Services Section, Boston University School of Public Health. Research for the international study discussed in this Article was supported by the Medical Trust (one of the Pew Memorial Trusts), the Muriel and Maurice Miller Foundation, and the Norwegian Marshall Fund. Support was also given by the Warren G. Magnuson Clinical Center of the National Institutes of Health. This Article builds upon previous work by the authors in The Journal of Con- temporary Health Lau, and Policy and The American Journal of Human Genetics.

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