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.