Personal genetic testing gets celebrity treatment

Angelina Jolie has an op-ed in today’s NY Times about her decision to have a preventative double mastectomy. This decision came after watching her mother die as a result of breast cancer, and after having some personal genetic testing done:

I have always told them not to worry, but the truth is I carry a “faulty” gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.

My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.

Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.

I think the op-ed is actually quite well written. Many discussions of breast cancer and the BRCA genes fail to mention that most cases of breast cancer are not strongly associated with any inherited genetic mutation. After talking about the details of what is involved in the series of procedures associated with a mastectomy, Jolie returns to another important (and often under mentioned point):

The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.

The reason testing for the BRCA1 and BRCA2 genes is so expensive is the proprietary nature of the BRACanalysis test, patented by Myriad Genetics, Inc. In the context of her op-ed, this is probably a side-track she didn’t want to take, but Myriad’s patents are at the heart of a case currently awaiting decision at the Supreme Court (see SCOTUSblog for more details).

I am always curious at the role of celebrity in the transmission of cultural norms. I assume Jolie’s piece will end up as one of the NY Times’ “most e-mailed” articles. How it might shape the view of personal genetic testing is less clear.

About Adam Van Arsdale

I am biological anthropologist with a specialization in paleoanthropology. My research focuses on the pattern of evolutionary change in humans over the past two million years, with an emphasis on the early evolution and dispersal of our genus, Homo. My work spans a number of areas including comparative anatomy, genetics and demography.
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