Angelina Jolie announced today in a New York Times op-ed that she recently underwent a double mastectomy after finding out that she has the gene mutation known as BRCA1, which increases a woman’s chances of getting breast cancer by 87% over her lifetime (and ovarian cancer by 50%). It is certainly a marvel of modern medicine that we not only know about this gene mutation but have the ability to test for it. Jolie’s announcement put a well-known face to the name “BRCA,” which has been in the news a lot this year as part of a larger discussion about genetics and the law.
A company called Myriad Genetics holds the patent on the BRCA gene and is the only company allowed to test for it. The question of whether a company is allowed to patent a gene has been a hugely controversial issue. A lawsuit brought against Myriad a few years ago by plaintiffs represented by the ACLU has ended up in the Supreme Court and is being considered now.
One of the reasons that more people are taking notice of this issue – and perhaps the most important reason to many people in terms of its practical implications – is cost. Because Myriad is the only company performing the test, it has a monopoly and can set the price accordingly. The going rate is over $3,000 – a fact that Jolie said in her op-ed “remains an obstacle for many women.” If you are considered at-risk, meaning you have close family members who had breast or ovarian cancer at a young age and have a familial heritage generally associated with this gene mutation, it is likely that insurance will cover the cost of the test. But what if you are uninsured or underinsured?
In 2008, a POV film called In the Family explored the questions – both philosophical and practical – brought up by gene patenting. Filmmaker Joanna Rudnick, who herself tested positive for BRCA 1 and was diagnosed with early stage breast cancer in her 30s, approached Myriad and put these questions to Mark Skolnick, the company’s founder. (You can see a clip of the interview below, and read more about Joanna Rudnick here.) His take on it was mixed. He was adamant (and seemingly defensive) that he had every right to patent a gene, that research companies would never be able to do their work and save lives if they didn’t have that right, and that the backlash against gene patenting was crazy. But he also conceded that the cost eventually needed to come down to make the test more accessible.
It has not worked out that way so far. Actually, the cost has gone up since In the Family came out, and although Myriad offers some financial assistance for low-income patients, the price is still prohibitive enough to pose a major disparity problem. Besides cost, a number of other potential problems have been brought up. The threat of patent infringement could get in the way of doctors offering personalized medical treatment based on a patient’s genetic makeup. It could be a roadblock to information sharing that would allow for future discoveries. In addition there is the most basic question and the one most difficult to pin down: is there such thing as a patent on a naturally occurring phenomenon like a gene?
These questions and more will be considered by the Supreme Court this year. Disruptive Women will continue to report on this issue, so stay tuned… and for an interesting watch, check out In the Family on PBS.org.