I Ethics, Law, and Policy
Undertaking a project such as The Cancer Genome Atlas (TCGA) raises existing as
well as new and unique ethical, legal, and policy questions that will need to be
considered and addressed during the course of this project. As a result, a
group of professionals and members of the public have been identified to oversee
this task.
An Ethics, Law, and Policy Group has been formed consisting of the following people:
Membership
William P. Bro, B.S., Kidney Cancer
Association (KCA)
Catherine E. Ivy, M.S., The Ben
and Catherine Ivy Foundation
Patricia King, J.D., Georgetown
University Law Center
Staff Members
Elizabeth J. Thomson, D.N.Sc., R.N., National Human Genome Research Institute
Peter Good, Ph.D., National Human Genome Research Institute
Carolyn Compton, M.D., Ph.D., National Cancer Institute
Martin Ferguson, Ph.D., National Cancer Institute
Daniela S. Gerhard, Ph.D., National Cancer Institute
Purpose of the ELP Group :
To examine the ethical, legal, and policy issues that will need to be addressed
in implementing The Cancer Genome Atlas, and to identify new issues that may arise
as a result of the data generated by this project.
Relevant issues will include but not be limited to:
(a) issues surrounding the informed consent process allowing for:
(i) the sequencing of DNA from both cancer and normal tissues
(ii) the collection and linking of family, health, and medical records to sequence,
as well as other genomic information
(iii) the sharing of this information via a database that will be made widely accessible
to researchers around the world
(b) unique data release and intellectual property issues
Resources used by ELP Group Members:
Belmont Report
Research Regulations
Bioethics Resources
Fort Lauderdale
Report
|