Cancer, Genetic Testing, and Intellectual Property

Bob Timmermann, Senior Librarian, History & Genealogy Department,
Blue, green and orange color ribbons to represent for genetic testings of cancers

It took one New York Times op-ed piece by a very famous celebrity to show how the matter of our genes, genetic testing, health care system, and intellectual property system are all intertwined. We hope to give you some resources to better understand all of the issues dealing with a set of letters that is in the news: BRCA.

The recent announcement by Angelina Jolie in a New York Times op-ed piece about her decision to get a double mastectomy after testing positive for a gene associated with an increased risk for breast and ovarian cancer has cast more attention on to a complicated and somewhat controversial issue affecting medicine, economics, and intellectual property rights.

The subject here is a genetic mutation, that goes by the name of BRCA. That set of letters stands for Breast Cancer Susceptibility Gene. There are two versions of it that go by the names of BRCA1 and BRCA2.  Medical studies indicate that there is a much greater risk of developing breast cancer or ovarian cancer, although there is no agreement on just how to quantify that risk. Read more about it here from the National Cancer Institute. It does a good job of putting the odds of developing cancer into perspective.

LAPL offers two excellent books that cover this genetic test and its ramifications.

Positive Results: Making the Decision When You’re At High Risk for Breast or Ovarian Cancer by Joi L. Morris and Ora K. Goodson 616.99449 M876
Morris tested positive for the BRCA2 gene and set out to find more information for other women with genetic predispositions to cancer. While Morris opted for a mastectomy, many other treatment options are detailed in this book.

Eating Pomegranates: a memoir of mothers, daughters, and the BRCA gene by Sarah Gabriel. 616.99449 G118
Gabriel is a British journalist who lost a mother to ovarian cancer. She tested positive for the BRCA1 gene and had to deal with decisions about her health that she knew would ultimately affect her own children. This book covers the incredibly difficult choices that we have to make about our own health.

In addition to the health ramifications of the BRCA gene, there is also a legal battle surrounding. The BRCA1 and BRCA2 genes at the moment require a relatively expensive test to detect their presence. A full test can cost up to $3000 and is not covered by all health insurers. These two genetic mutations, like many other human genes, are actually covered by a U.S. Patent.

A Utah laboratory by the name of Myriad Genetics has patented the BRCA1 gene (US Patent #7,250,497) and a test for it. The validity of that patent has been challenged in Federal court. On April 15, the Supreme Court heard oral arguments in the case of Association for Molecular Pathology v. Myriad Genetics, Inc. A decision on the case may come this summer.

You can read a summary of the arguments about this case from the nonpartisan SCOTUSblog. The main question before the Court is “Are human genes patentable?” The ramifications of this decision may be far-reaching. Can you patent something that appears in nature? If so, just what is nature? How do the worlds of science and the law intersect here?

As always, please consult a medical professional for information on whether or not genetic testing is appropriate for you.