Ethics, Law and Policy Group

The Ethics, Law and Policy Group was created to identify and address critical ethical, legal and social questions faced by researchers and patients participating in The Cancer Genome Atlas (TCGA) program. The guidelines established by this group will continue to inform future policies that ensure effective and fair use of cancer genomic information.

Issues that were addressed included, but were not limited to:

  • Informed consent process allowing for:
    • Sequencing of DNA from both cancer and normal tissues
    • Collection and linking of family, health and medical records to DNA sequences, as well as other genomic information
    • Sharing of this information via a controlled-access database that is widely accessible to researchers around the world
    • Unique data release and intellectual property issues

External Membership
William P. Bro, B.S., Kidney Cancer Association
Lynn Dressler, Dr.P.H., University of North Carolina
Chanita Hughes-Halbert, Ph.D., University of Pennsylvania

Staff Members
Brad Ozenberger, Ph.D., National Human Genome Research Institute
Elizabeth J. Thomson, D.N.Sc., R.N., National Human Genome Research Institute
Martin Ferguson, Ph.D., National Cancer Institute
Kenna Shaw, Ph.D., National Cancer Institute
Mercedes Gorre, Ph.D., National Cancer Institute

Resources Related to the Work of the Ethics, Law and Policy Group
Office for Human Research Protections Regulations
Fort Lauderdale Report