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Imagine you could be the key to curing a disease or reducing the risk of suffering from a debilitating ailment for millions of people. Then imagine that you couldn’t help find that cure, because the gene inside you that holds the secret is owned by a company that won’t allow for testing or further research without a significant payment.

No need to imagine. It has already happened.

DNA research has evolved rapidly since scientists learned we could map it. Your DNA is unique to you and only you.  Well, kind of.  The part that is unique to you is limited to small variations on the genes, amounting to approximately less than 1% of your DNA. The rest of it is shared with every other human being past, present and future. In April 2003, scientists identified the genetic code we all share. Called The Human Genome Project, they successfully mapped the genetic makeup of every human being that has ever existed. And it was cool.

The possibilities of having this data codified are endless.  Great progress has been made in the past ten years understanding certain cancers and genetic diseases, not to mention the fortune companies can make on patenting them.

Yes, our genes are registered with the United States Patent and Trademark Office.

When scientists sequence a gene, they make what is called a synthetic copy. It’s chemically the same and has the same properties that were created by nature.  This has been going on for decades and is how we got to where we are with DNA science today. Being able to isolate this product of nature gives scientists the foundation to discover what makes us tick, and what makes us sick.

If they can afford the license, that is.

Patent law prohibits patenting anything that is considered a natural occurrence. While everyone would agree that there is nothing more natural than our cellular structure, some do argue that any physical (i.e., synthetic) copies of our genes aren’t “natural” and are, instead, a product of human ingenuity. Products can be patented. This is what Myriad Genetics has argued before the Supreme Court in The Association for Molecular Pathology vs. Myriad Genetics, Inc. Myriad owns the patent to the BRCA1  and BRCA2 genes, having been the first to isolate them. Mutations in these two genes have been identified as a key indicator to the risk of developing breast and ovarian cancers.

Angelina Jolie recently discussed her family history of breast cancer, as well as her decision to have a double mastectomy to reduce her risk in a New York Times op-ed. In it she indicated that she got tested for the BRCA1 gene. Myriad also owns the test for the gene, which costs thousands of dollars. They can charge whatever price they want, because no one else is allowed to test for it without going through them. In fact, nothing related to these two genes, including additional research, can be done without first going through Myriad.

Most women aren’t Angelina Jolie and most cannot afford thousands of dollars to determine their risk. Having such a barrier to access could have tremendous ramifications, considering that many populations, such as Eastern European women and African-American women, have a significantly high incidence of breast cancer, with black women having a 60% higher death rate.

It is unknown if a less expensive test could be developed. Because of Myriad’s patent, clinics and researchers would have to pay a license fee to even look into the possibility of developing a cheaper alternative. That’s assuming that Myriad would allow them to do the research at all.

It is estimated that almost 40% of human genes are patented. Many in the scientific community believe in, and understand the value of, collaborative efforts in the name of science. Still, the only reason to patent anything is to protect any future financial benefit. It is more than unsettling to know that the very building blocks of human life could be in the hands of a company that will only make it available to those most able to pay.

Edward R. Murrow asked Jonas Salk, the man who created the polio vaccine, who owned the patent to his life changing discovery.  Mr. Salk famously replied, “Well, the people, I would say. There is no patent. Could you patent the sun?”

This month the Supreme Court will let us know the answer.

 

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