Researchers Generate Reports and Online Info on Ethical and Legal Issues of Genetics

Genetic information and the law: Establishing a comprehensive database of essential cases and regulations for public health

From 2001 to 2003, a California-based research group, the Institute for the Future, used two exploratory grants from the Robert Wood Johnson Foundation (RWJF) to assess health care decision-makers' knowledge about new discoveries in genetics and to develop two proposals for a major educational initiative to inform health care leaders about the new discoveries, their clinical applications and the legal and ethical issues surrounding them.

In 2003, RWJF awarded the Cambridge-based Council for Responsible Genetics a grant to address one knowledge gap identified by the assessment—health care leaders' need for information on genetics and the law. This project produced:

  • A series of six reports on key topics in genetics and the law.
  • An online clearinghouse of legal cases relevant to genetic information.
  • A database of state legislative information on genetics issues.

Key Results

  • From April 2001 through January 2002, the project consultant interviewed health care leaders, individually and in group workshops, to assess their knowledge and attitudes about genomic medicine.

  • Project staff created an outline of a genomics curriculum and produced an outline of a 10-year forecast of genomic medicine to serve as the cornerstone for future initiatives.

  • Staff created two databases of information on genomic medicine.

  • The council produced a series of six reports on legislation and court precedents relating to applications of human genetics.

  • The council produced an online clearinghouse of legal cases relevant to genetic information.

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