BETHESDA, Md--Scientific prog-ress in mapping the human genome has been rapid and remarkable, but development of social and public policy in response to the scientific discoveries has lagged behind and is woefully inadequate, members of the President's Cancer Panel decided after an all-day meeting.
The Human Genome Project, directed by the National Center for Human Genome Research, the National Institutes of Health, and the Department of Energy, is aimed at increasing our understanding of genetic diseases by mapping and sequencing the human genome, as well as that of selected other organisms.
Nonscientific Issues to Be Studied
The cancer panel, chaired by Harold P. Freeman, MD, Harlem Hospital Center, heard from Elke Jordan, MD, deputy director of the National Center for Human Genome Research, that the mapping process is complete and sequencing is progressing well. She said that scientists have now isolated single genes that cause disease, and discovery of polygenic causes of human disease are expected to occur in the near future.
Dr. Jordan said that funds have been set aside to explore nonscientific issues arising from knowledge gained from the Human Genome Project. These include responsible clinical use of genetic information; whether to divulge results of genetic testing to health insurance companies, employers, and other third parties; privacy and medical confidentiality; and education of health professionals and the public about genetics, genetic testing, and gene therapy.
Who Owns the Sample?
Patricia A. Barr, an attorney and member of the National Breast Cancer Coalition, talked about genetic privacy and medical confidentiality. She used the term "linkable data" to refer to the ability to link a stored sample of tissue that has or will be subjected to genetic testing with an identifiable person.