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Our genes belong to us

4 min read

Since Angelina Jolie revealed last week that she had undergone a double mastectomy in order to head off what appeared to be a strong likelihood of developing breast cancer, the word “courageous” has been fastened to her to the point of cliche.

And few would dispute that undergoing the procedure, and publicly revealing it in the hope that, as she wrote in The New York Times, “other women can benefit from my experience,” was indeed courageous.

However, it also was a decision made from an exceptionally privileged vantage point. Not all states require insurers to cover preventative mastectomies, and there is no federal mandate for such coverage, so women whose policies won’t cover the surgery would have to pay for it out of pocket. Considering the price tag, many women who face an elevated risk of breast cancer might be inclined to take their chances.

Jolie, who has enjoyed a highly remunerative movie career, has no such worries about cost. She also was able to undergo an expensive genetic test, the outlay for which is in the neighborhood of $3,000 to $4,000, that determined she had flaws in the BRCA1 gene, which put her likelihood of developing breast cancer around 87 percent. Now, her risk is somewhere below 5 percent.

With almost 500,000 women dying around the world every year from breast cancer, according to figures provided by the World Health Organization, and the proliferation of pink-ribboned awareness campaigns that have spotlighted the disease, making the genetic test available on a more widespread basis, so it would be more affordable for women with all kinds of insurance and all kinds of risk levels, should be a top-drawer priority. However, the four-figure expenditure for the test is unlikely to drift downward because one company, Utah’s Myriad Genetics, owns the patent on both the BRCA1 gene, along with the companion BRCA2 gene. The implications of this? According to The New Yorker, “Anyone conducting an experiment without a license can be sued for infringement of patent rights. This means that Myriad can decide what research is carried out on those genes, who can do that research, and how much any resulting therapy or diagnostic test will cost.”

The article continues, “The same holds true for other genes and for any pharmaceutical company, scientist, or university that holds patents similar to those held by Myriad.”

The whole notion that genes, which all of us possess in bumper-crop abundance, can be patented and subject to commercial imperatives, is a disquieting prospect. Genes are something that occur within nature, not something invented in a laboratory, crafted in a workshop or penned by a composer. When you sit down and ponder it, it seems more than a little odd that “King Lear,” one of the greatest works of the human imagination, is in the public domain, while a gene has been stamped with a copyright.

The U.S. Supreme Court could soon be settling this issue. In April, the nine justices heard arguments in a suit brought against Myriad Genetics by the American Civil Liberties Union and the Public Patent Foundation, challenging the notion that a gene, or a genetic sequence, can be patented. A decision is expected in June. While trying to divine how the court will rule can be hazardous – just last year, everyone was confident that Anthony Kennedy would be the swing vote in the decision on the constitutionality of Obamacare – the justices sounded skeptical. Sonia Sotomayor compared it to making cookies: “I can bake a chocolate-chip cookie using natural ingredients … and if I combust those in some new way, I can get a patent on that. But I can’t imagine getting a patent simply on the basic items of salt, flour and eggs.”

We hope the court makes the right call and decides that our genes belong to all of us.

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