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 2002, RWJF turned down the two proposals partly because of a strategic restructuring at RWJF and the subsequent decision not to support major initiatives in genetics.

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.
• Project staff 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.

Funding

RWJF provided three grants totaling $394,375 to support these projects.