Tuesday, May 14, 2013

Angelina Jolie, the BRCA Genes and Myriad Genetics

Angelina’s Jolie’s announcement in today’s New York Times op-ed, “My Medical Choice”, that she has had a double mastectomy is so timely for me. I just finished Jeff Wheelwright’s, TheWandering Gene and the Indian Princess. The book traces the BRCA1 and BRCA2 genes through a large extended family in the Southwestern United States. Although the book wanders through many other historical social and religious threads, the main focus is how the BRCA genes are inherited and chronicles the decisions many women faced in dealing with the results.

Also, the AMP v. Myriad Genetics case now before the US Supreme Court will refocus attention to whether the tests for these genes can patented and thus create a monopoly which allows Myriad to profit handsomely from the test. Although I’ll not go into the legal intricacies here, you can read the plaintiff’s (ACLU’s) viewpoint for yourself. Additional background can be found at Judy Russell’s The Legal Genealogist blog. The bottom line for this post is that the price Myriad is able to charge discourages many women from seeking testing that may be critical to their informed health decisions and/or their peace of mind. Look for the Supreme Courts’ decision around the end of June.

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