By Dr. Kate Scannell, Syndicated Columnist
First Published in Print: 05/26/2013
On May 14, The New York Times published a moving essay by Angelina Jolie in which the actor revealed she had undergone a double mastectomy -- even though she did not have breast cancer. However, Jolie was aware that she had inherited a genetic mutationthat increased her risk of developing breast cancer to about 87 percent. That mutation, associated with a "BRCA gene," additionally upped her chances for developing ovarian cancer to about 50 percent. Facing such grim odds, Jolie decided to be proactive and minimize those risks by having her breasts and ovaries surgically removed.
Jolie wrote that while her decision to undergo mastectomy was not easy, " ... it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don't need to fear they will lose me to breast cancer."
Public response to Jolie's bold revelation was overwhelmingly sympathetic. And many commentators appreciated her essay's substantial potential to educate the public about tests available to detect BRCA genetic mutations -- particularly relevant to men and women with family histories of breast and ovarian cancers. More importantly, she hoped her story would empower those testing positive for the mutation to become more fully informed about prophylactic options that could, possibly, save their lives.
Additionally, it was obvious that Jolie's revelation generated significant shock and awe. After all, it's myth-shattering to acknowledge that someone who seems to "have everything" can't be shielded from ordinary bad luck or mundane mortal tribulations. It's also jarring to read the words of an iconic American sex symbol who does not struggle with the skin-deep cultural notions of beauty and femininity that have been firmly associated with her body; instead, after her surgery Jolie asserts ". . . I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity."
Mostly, however, Jolie's essay may shock because it directly and forcefully reminds us that personal choice determines much of what happens to us in life. Socioeconomic forces can mightily intervene, Mother Nature frequently visits, genetic mutations sometimes lurk, and gods and the Fates may hold sway. Still, in between those providences, our bodies and our lives and the people to whom they matter are profoundly affected by the daily choices we make about our own health and well-being. And consciously acknowledging that can prove to be a weighty personal responsibility.
Clearly, for medical and moral reasons, little should stand in the way of people who, like Jolie, have familial risk for developing breast or ovarian cancers and wish to seek genetic testing as pro-active responsible stewards of their own bodies.
And yet, as you read this, the U.S. Supreme Court is mulling over a case that addresses formidable legal and financial obstacles in the way of obtaining BRCA genetic testing, whether in the clinic or research lab. Those obstacles stem from a for-profit company's claim to own patents on the BRCA genetic mutations themselves. That company, Myriad Genetics, contends that its discovery and isolation of those genes justifies its patent rights and, consequently, its authority to monopolize and regulate testing for BRCA gene mutations.
The case raises complex theoretical and legal questions about whether an isolated human gene should even be considered a patentable invention. Plaintiffs challenging Myriad's patent argue that genes should be considered more like gold: a miner who might discover a unique way to locate and extract gold from earth is, nonetheless, not entitled to a patent on gold.
On a more practical plane, plaintiffs contend that Myriad's patents have allowed the company to charge exorbitant and unwarranted fees for BRCA testing: up to $3,000. This has not only created a financial obstacle for many women and men seeking testing, but it has also contributed to escalating health care costs. And because no other lab is free to perform the test, patients have nowhere else to turn for confirmatory testing when false negative results from Myriad labs are suspected.
Finally, many researchers claim that Myriad's monopoly has obstructed independent scientific investigation that could advance understanding about BRCA genetic mutations in service of patient care.
In court, Myriad lawyers argued their patent was valid because the company's capacity to isolate the BRCA genes was a product of "human ingenuity" and that patients never had the BRCA isolated gene "before the Myriad invention." But I think that's a patently misguided and self-interested outlook, and I hope the case against Myriad succeeds.
In my view, genes are naturally occurring things -- never property or byproducts of human invention. They have been passed over centuries, from one generation to the next, belonging to everyone but to no one in particular. And they have defined who we are as human beings, long before the gold rush on the human genome was made possible by the happenstance of modern technologies. Real lives, embodying innate genetic mutations, are at stake.
Kate Scannell is a Bay Area physician and the author of "Death of the Good Doctor."
© 2013, Kate Scannell
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