April 19, 2005
National Press Club
Washington, DC
One of the most immediate payoffs of sequencing the human genome is the ability to use a growing number of genetic tests to diagnose an existing condition or to test for one's risk of disease. Currently, more than 800 clinical tests are available for conditions such as hereditary breast cancer, Parkinson disease, Huntington disease, Tay-Sachs disease and cystic fibrosis. Until relatively recently, one could only be tested by going to the doctor.

But now, some genetic testing companies are beginning to sell these tests directly to consumers, eliminating the need to go to a doctor's office. Test results are made available online, in the privacy of one's own home. One company sells an at-home genetic test for the genetic predisposition to addiction; another company sells at-home genetic tests for infertility. Will at-home infertility tests provide useful genetic information in a private, non-threatening way? Or will these tests take advantage of people desperately seeking answers to their infertility?

Gene test companies and some consumer groups hope to empower individuals by providing direct access to genetic information. Other consumer advocates worry that people may waste their money on tests that have not yet been proven reliable or accurate. Health advocates are concerned that consumers may make poor health decisions based on test results and without benefit of genetic counseling or other medical advice.

To explore the commercial, legal, medical and ethical issues raised by direct-to-consumer marketing of genetic tests, The Genetics & Public Policy Center at Johns Hopkins University convened a public meeting to hear from industry spokespersons, ethicists, physicians and policy analysts.

Panelists:
R. Alta Charo, J.D.
Elizabeth S. Wilson Professor of Law and Bioethics, University of Wisconsin at Madison

Kathy Hudson, Ph.D.
Director, Genetics and Public Policy Center and Associate Professor, Berman Bioethics Institute, Institute of Genetic Medicine, Department of Pediatrics at The Johns Hopkins University

Gail H. Javitt, J.D., M.P.H.
Policy Analyst, Genetics and Public Policy Center

Pamela Madsen
Founder and Executive Director, American Fertility Association (AFA)

Michael T. Mennuti, M.D.
Professor and Chair of Obstetrics and Gynecology, University of Pennsylvania

Ryan Phelan
Founder and CEO, DNA Direct

Richard T. Scott, Jr., MD, FACOG, HCLD
Founding Partner, Reproductive Medicine Associates

Video Link:
http://www.dnapolicy.org/video/dcgt/index.htm

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