ETHICAL &LEGAL ISSUES IN THE DIFFUSION OF GENETIC TESTS

  • Scott, William K (PI)
  • Collins, F. (PI)
  • Collins, Francis S. (PI)
  • Holtzman, Neil (PI)
  • Carter, Kenneth (PI)
  • Speer, Marcy C. (PI)

Project: Research project

Description

Tests for common as well as rare genetic disorders will proliferate as more
of the human genome is mapped. In addition to predicting those at risk for
future disease, genetic tests can detect those at risk of having affected
offspring, and, by prenatal diagnosis, the affected offspring as well.
Such identification permits couples the options of avoiding the conception
or birth of affected offspring. By these means as well as by
presymptomatic interventions, genetic tests can result in reducing the
burden of disease. However, some people's religious and ethical beliefs
and concern for personal autonomy will lead them to reject testing. The
objective, and rapid diffusion of genetic tests without infringing on
personal autonomy and without neglecting those with rare diseases. With an insufficient number of trained geneticists to provide tests, non-
geneticist physicians--including obstetricians, pediatricians, internists,
and psychiatrists--will be involved in genetic testing. In this project,
the knowledge of, and attitudes toward, genetic testing of physicians and
master's level genetic associates will be determined. The law has already been used to mandate genetic screening, thereby
undermining individual autonomy. Courts have held physicians liable for
not performing genetic tests, thereby exerting pressure on other physicians
to provide tests. A retrospective analysis of malpractice cases involving
genetic technologies and those involving other technologies will determine
whether courts have used different factors in deciding genetic compared to
non-genetic cases. Current legislators and judges will be surveyed on
their attitudes toward the use of law to alter the rate of diffusion of
genetic tests. Many genetic tests are performed in university laboratories and offer
little financial reward. Mapping of the human genome has already
stimulated commercial interest. The extent to which commercial support of
scientists working in universities as well as in industry influences the
sharing of research findings and interest for rare diseases will be
determined.
StatusFinished
Effective start/end date5/1/901/31/14

Funding

  • National Institutes of Health
  • National Institutes of Health: $86,519.00
  • National Institutes of Health: $110,613.00
  • National Institutes of Health
  • National Institutes of Health: $63,825.00
  • National Institutes of Health: $89,115.00
  • National Institutes of Health: $93,819.00
  • National Institutes of Health: $107,924.00
  • National Institutes of Health: $86,742.00
  • National Institutes of Health: $86,276.00
  • National Institutes of Health
  • National Institutes of Health: $110,613.00

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Research Personnel
Genetic Testing
Inborn Genetic Diseases
Human Genome
Physicians
Rare Diseases
Technology
Personal Autonomy
Genetic Engineering
Malpractice
Prenatal Diagnosis
Psychiatry
Reward
Human Genome Project
Industry
Parturition
Pressure
Chromosome Mapping
Research
Single Nucleotide Polymorphism

ASJC

  • Medicine(all)
  • Biochemistry, Genetics and Molecular Biology(all)