Assessing Genetic Risks: Implications for Health and Social Policy

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National Academies Press, Jan 1, 1994 - Science - 352 pages
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Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening.

Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decisionmaking, public health objectives, cost, and more. Among the important issues covered:

  • Quality control in genetic testing.
  • Appropriate roles for public agencies, private health practitioners, and laboratories.
  • Value-neutral education and counseling for persons considering testing.
  • Use of test results in insurance, employment, and other settings.


 

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This 1994 book offered little hope for the individual that proved to have a genetic disorder, "The ultimate goals of these scientific advances are the treatment, cure, and eventual prevention of ... Read full review

Contents

EXECUTIVE SUMMARY 1
SETTING THE STAGE 29
GENETIC TESTING AND ASSESSMENT 59
LABORATORY ISSUES IN HUMANGENETICS 116
ISSUES IN GENETIC COUNSELING 146
PUBLIC EDUCATION IN GENETICS 185
PERSONNEL ISSUES IN HUMAN GENETICS 202
FINANCING OF GENETIC TESTING AND SCREENING SERVICES 234
SOCIAL LEGAL AND ETHICAL IMPLICATIONS OF GENETIC TESTING 247
RESEARCH AND POLICY AGENDA 290
A Workshop Participants 309
B Committee Biographies 317
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