Gene Testing Irony: Once Restricted, Now a Right?

No matter where you stand on the question of patenting genes, the ironies involved in the American Civil Liberties Union's (ACLU) lawsuit against the gene testing company Myriad Genetics are wonderful to contemplate. Arguing that genes shouldn't be patented, the ACLU and others sued Myriad Genetics, the patentholder of the BRCA1 and BRCA2 breast cancer gene tests. Last week, the ACLU prevailed in a federal district court.

Never mind all that, let's get on to the ironies. Back in 2000, I wrote an article "Warning: Bioethics Could Be Hazardous to Your Health" in which my lede featured the story of breast cancer survivor Joy Simha. Simha's physicians, following the consensus of bioethical advice, refused to tell her the results of her BRCA gene test. Why?

By refusing to reveal such test results to their patient, Simha's doctors believed they were practicing medicine at the highest ethical level; keeping patients in the dark in such circumstances has been recommended by such prestigious bioethics authorities as a 53-member panel of ethicists and lawyers chaired by Stanford University law professor Henry Greely. "The test for BRCA1 should be confined to the research setting," declared the panel's report which was presented at a conference at the University of Southern California's Pacific Center for Health Policy in 1996. The ethics panel advised women not to take the commercial test for BRCA1 because "there are no known methods for preventing breast or ovarian cancer that would be particularly important to women with versions of these genes."

Nor is the panel at the USC conference alone in its opinion. In 1998, George Annas, director of the Law, Medicine, and Ethics Program at the Boston University Schools of Medicine and Public Health, conceded that the carrier of the BRCA1 gene has a high risk of contracting breast cancer. Nevertheless, he argued in his book, Some Choice: Law, Medicine, and the Market, "Since there is no way to prevent this disease, what good is knowing you will probably get it in the future?" Francis Collins, the director of the Human Genome Project, agreed in U.S. Senate testimony in 1996 that the BRCA1 test should not be commercially available to women. According to Collins, the information that a woman might get from such a test is "toxic."

Toxic? But that was then, this is now. Among many other reasons the ACLU argued against Myriad's patents is:

Individual patients' rights are violated because gene patents impede access to medical information and care.

 What was once declared "toxic" is now apparently a right.