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At the cost of

Published April 27, 2013 1:01 am
This is an archived article that was published on sltrib.com in 2013, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

Nov. 1, 2011, was the day I found out I carried a deleterious mutation of the BRCA-1 gene. My gut had already told me, earlier on the day I was tested, that I would be positive. But upon actually hearing the news that I had an 85 percent chance, in my lifetime, of developing breast cancer, the words felt like a weight on my chest. I couldn't breathe.

Yes, I could screen the heck out of my breasts, but that wouldn't stop a tumor from forming. Eventually, one of the MRIs or breast exams would very likely show, based on the numbers and my family history, a suspicious lesion or palpable mass that would be cancer.

I made a "drastic" decision. I opted for a risk-reducing prophylactic mastectomy.

I was distraught for weeks before my surgery. It couldn't happen soon enough. A few family members could not wrap their head around the notion that I would remove perfectly "healthy" breast tissue. But for me there was no other choice. I would not let this mutation hold me hostage, or let it play Russian roulette with my life.

I cannot begin to explain the overwhelming sense of relief when I awoke from anesthesia that cold afternoon last February. My breasts were gone. But more important, my life was mine again.

Earlier this month, the Supreme Court of the United States heard arguments as to whether isolated genes, like BRCA-1/2, can be patented. The court's decision has the potential to extend or save millions of lives. Under the current law, if companies can patent our DNA, they can prevent us from receiving affordable testing and new and effective treatments for diseases that have the potential to take our lives.

Currently, there are two options for BRCA-1/2 mutation carriers: worrisome, watchful waiting, or radical surgery. By holding the patent for BRCA-1/2, Myriad Genetics may actively block work that promises to provide treatments and potential cures. If it is found that either of my children inherited the mutation, and the current law is upheld, they may have no better options than those I was given.

The decision will affect far more than just BRCA-1/2 carriers. The Human Genome Project has identified 19,599 protein-coding genes. Already, more than 4,000 genes are covered by at least one U.S. patent. If a corporation monopolizes the genes, it means the world's scientists cannot collaborate as freely to investigate the effects of, and treatments for, genetic mutations. This restriction could potentially delay cures for cancers, targeted gene therapies for chronic disease, and inventions of vaccines.

These are our genes. Our diseases. Our lives. The only prudent and judicious action is for the Supreme Court to strike down the appellate court's decision that allowed the patent (Association for Molecular Pathology et al. v. Myriad Genetics, et al.). Human genes should not be patented.

Unlike many family members with a BRCA-1 mutation, I was able to reduce my breast cancer risk substantially by learning of the deleterious gene before a cancer diagnosis was made. That probably saved my life. But it cost me my breasts.

If the patent to Myriad Genetics had not been granted in 1997, what better optional treatments would have been afforded to me and other mutation carriers, aside from such drastic risk-reduction surgery? And if all of our genes can be patented, what further treatments, and lives, will be lost?

Elizabeth DeHart is a lifelong Utah resident, employed in sports medicine, mother of 2, and carrier of a deleterious BRCA-1 gene mutation. She lives in West Jordan.






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