We’ve written previously about the ACLU’s concern about gene patents, especially regarding the possibility that “high licensing and diagnostic testing fees that some biotech companies charge for use of ‘their’ genes are inhibiting biomedical research and interfering with patient care.”
On May 12, the ACLU and the Public Patent Foundation filed a lawsuit against the U.S Patent and Trademark Office, Myriad Genetics and the University of Utah Research Foundation, “charging that patents on two human genes associated with breast and ovarian cancer are unconstitutional and invalid.” The suit focuses on the BRCA1 and BRCA2 genes, mutations of which are related to increased risk of breast and/or ovarian cancers.
In explaining the rationale for the lawsuit, ACLU Executive Director Anthony D. Romero wrote:
Knowledge about our own bodies and the ability to make decisions about our health care are some of our most personal and fundamental rights. The government should not be granting private entities control over something as personal and basic to who we are as our genes. Moreover, granting patents that limit scientific research, learning and the free flow of information violates the First Amendment.
The following video provides an excellent overview of concerns about BRCA gene patenting, with additional commentary from ACLU representatives and women concerned about how the patents affect their own health:
Our Bodies Ourselves has joined the suit as a plaintiff, along with the Association for Molecular Pathology, American College of Medical Genetics, American Society for Clinical Pathology, and the College of American Pathologists, several prominent individuals in genetics and pathology, genetic counselors, and individual women patients who have been affected by the patents.
Breast Cancer Action has also joined the suit as a plaintiff, explaining that:
When one company controls all the testing, less information and resources are available to both patients and researchers. Women unable to afford the $3,500 fee are prevented from access to the test; women seeking second opinions on any results they might receive have nowhere to go; and women of African, Hispanic, or Asian descent are at a significant disadvantage because they disproportionately receive ambiguous results when tested by Myriad.
BCA Executive Director Barbara Brenner notes the importance of the landmark case:
There are so many injustices and inequities in breast cancer. The time has come to address them in all their forms—as they affect genetic risk, as well as social, political, and economic realities. This case is an important first step.
OBOS Executive Director Judy Norsigian will appear in a segment on the issue produced by Ivanhoe Broadcast News’s “Smart Woman” team — we’ll post an update when the piece airs.
The suit itself, Association for Molecular Pathology, et al. v. U.S. Patent and Trademark Office, et al., was filed in the United States District Court for the Southern District of New York in Manhattan and can be accessed online via this ACLU webpage.
The ACLU is also providing answers to frequently asked questions about the issue, and a number of background resources and fact sheets. Individuals may also sign a statement of support for the plaintiffs.