What Can Angelina Jolie Teach Us About Gene Patents?

Angelina Jolie’s op-ed in The New York Times about her preventive double mastectomy sent shockwaves through the media. She represents a new generation of patients who are able to use genetic testing to make empowered, evidence-based decisions. While experts agree that her description of the procedure resulting in a breast cancer risk reduction from an 87% to a 5% chance might be an oversimplification, her courage in the face of such a difficult choice is laudable. Jolie now joins a class of “previvors,” unencumbered by the social stigma of these types of preventive procedures.

 

None of this could be possible without the BRCA1 and BRCA2 test, which helped to identify the mutated genes linked to cancer. But as Jolie so adeptly points out in her piece, “The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.”

 

The simple truth to take away is that while Jolie’s example will inspire many individuals to jump over the social stigma of preventative procedures, there is still one large hurdle to cross: gene patents. 

 

Last November, the Supreme Court heard the case Association of Molecular Pathology v. U.S. Patent and Trademark Office, concerning gene patents for BRCA1 and BRCA2 held by Myriad GeneticsAn article in The New York Times explains the company holds patents for “two human genes, which, when mutated, give a woman a high risk of getting breast or ovarian cancer. The patents give Myriad a monopoly on testing for these mutations, a highly lucrative business” that also prevents other companies from including these genes in their own tests. While many believe that preventing gene patents will slow research and incentives, others express concern for patients who are denied the benefits of these tests because the patents drive the price of the test up.

 

The American Civil Liberties Union (ACLU) has been arguing on the side of the plaintiffs since 2009 and has recently launched a public campaign entitled “Who Owns Your Body?“. Their website argues:

The U.S. Patent and Trademark Office (PTO) has granted thousands of patents on human genes – in fact, about 20 percent of our genes are patented. A gene patent holder has the right to prevent anyone from studying, testing or even looking at a gene. As a result, scientific research and genetic testing has been delayed, limited or even shut down due to concerns about gene patents.

 

As the Supreme Court moves closer to making a decision this summer, the stakes for patients and businesses are high. In spite of all this controversy, there is some good news: the Affordable Care Act will include a provision to cover BRCA1 and BRCA2 testing for many at-risk women. Many insurance companies also will cover/plan to cover the test for women who present certain risk factors, including familial history of the disease.

 

What are your thoughts on the current gene patent debate? Comment below.

 

Read more about the gene patent debate.

 

The featured image is taken from Suzanne Plunkett / Reuters.

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Rohan Jotwani, "Almost" MD/MBA

Rohan Jotwani is a co-founder of The "Almost" Doctor's Channel and serves as Managing Editor. He is currently an MD/MBA student at the Tufts School of Medicine and is an avid producer and reader on topics in digital health, neuroscience and global health. Raised in Seoul, South Korea and Flushing, Queens, Rohan graduated from Columbia University. He has previously worked at The Doctor's Channel, WebMD and Pfizer, and is the former President of the Columbia Debate team.