Assessing Genetic Risks: Implications for Health and Social Policy

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National Academies Press, Jan 1, 1994 - Medical - 352 pages

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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About the author (1994)

Arno Gunther Motulsky was born in Fischhausen, Germany on July 5, 1923. In 1939, he was one of more than 900 Jewish refugees aboard the German liner St. Louis who were turned away from Cuba and the United States. Before returning to Germany, four countries agreed to take one-fourth of the passengers. His family was assigned to Belgium. On May 10, 1940, the Germans invaded Belgium. Even though the family had just received United States visas, they were unable to leave. Motulsky was sent to an internment camp in France. In June 1941, he left France and traveled through Spain to Portugal, where he boarded a ship to the United States. In 1942, he passed the high school equivalency tests in Chicago. He worked and began taking college courses at Central Y.M.C.A. College. In 1943, he had been accepted to medical school at the University of Illinois at Chicago. However, he was drafted and the Army sent him to Yale University to finish his premedical courses. He returned to the University of Illinois for medical school, entering as a private first class. He graduated in 1947 and took further training in internal medicine and hematology. In 1951, he was called back into the Army and assigned to Walter Reed Army Medical Center in Washington, where he studied inherited blood disorders. He was discharged in 1953. After being discharged, he became an instructor at the University of Washington's new medical school in Seattle. He taught internal medicine and hematology. He was the founder of medical genetics and pharmacogenetics. In 1957, he started one of the first divisions of medical genetics in the United States. He was the author of more than 400 scientific articles. He and Friedrich Vogel wrote the textbook, Human Genetics: Problems and Approaches, in 1979. Motulsky died on January 17, 2018 at the age of 94.

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