ACLU Survey For Women Who Have Been Advised to Get BRCA Genetic Testing

By Rachel Walden — April 3, 2009

The ACLU has taken an interest in gene patents, which allow human genetic sequences and gene tests to be patented,  expressing concern that “While the purpose of the patent system is to encourage innovation, the 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.”

Although somewhat technical, this Human Genome Project Information page from the Oak Ridge National Laboratory provides an overview of the topic, including some of the arguments for and against gene patenting, with lots of links to related information.

A freely available article from Nature Reviews Genetics, Patenting human genetic material: refocusing the debate, also provides good background reading on this issue, including a discussion of concerns about patenting from “adversely affecting the research environment to hampering the distribution of useful technologies.” A number of other articles on this topic are also freely available through PubMed Central.

The ACLU is specifically focused on patents related to the BRCA1 and BRCA2 genes relevant to breast and ovarian cancer, explaining that:

“…the Utah-based company Myriad Genetics has patented two genes – BRCA1 and BRCA2 – and certain mutations along these genes that have been associated with an increased risk of certain forms of breast and ovarian cancer. The high licensing and diagnostic testing fees charged by Myriad have forced some researchers to discontinue research on breast cancer and have prevented women from having access to screening for mutations.”

The organization is currently conducting a survey to gather information on women’s experiences with BRCA testing:

We are interested in hearing from you if you have been advised to get the BRCA genetic test and fall into one of the following categories:

1) You were tested, and had problems with or concerns about the testing process (for example, your results were uncertain or incorrect, or you were advised you needed to be tested a second time); or

2) You were tested, and want to be tested again through another lab for verification; or

3) You wanted to be tested, but had financial problems getting the test (for example, you could not afford it or your insurance did not cover it); or

4) You want to determine the BRCA status of a deceased relative.

If your answer is YES to even one of these questions, please take the ACLU’s survey: The ACLU is looking into the legality of patenting human genes, including the BRCA1 and BRCA2 genes, and the effects of gene patenting on research and testing.

For additional information on genetic testing and breast cancer in general, see this page from the National Cancer Institute.

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