Get Your Hands Off My Genes!

How the decision to not patent human genes moves us closer to genetic empowerment.

Hannah Waters
Jun 14, 2013 · 4 min read

We should all be able to access our genetic information. Knowing what hand you’ve been dealt can tell you what diseases may afflict you one day and guide your everyday choices to keep you healthier longer, if that’s what you want.

But we can’t make those choices if we can’t even afford the testing that lets us peek inside our cells in the first place. However, based on yesterday’s unanimous Supreme Court ruling that genes cannot be patented, we’re one step closer to that reality.

The idea of claiming a patent on something that is found in every cell in every human makes me, and many others, sick to our stomachs. How can a company or person own and control something that is part of our human heritage, generated by evolution? While genetic diagnostics company Myriad Genetics, the defendant in the Supreme Court suit, didn’t claim to intellectually own the genes in our bodies, they argued that by snipping the gene from the genome, they created a brand-spanking-new molecule that could be used in new contexts: a patentable invention.

These genes are BRCA1 and BRCA2: two genes that repair damaged DNA in most people. But in a small group of women, one or both genes are mutated, making breast cancer near-inevitable with up to a 90% risk and a 60% risk of ovarian cancer. For a woman with a history of breast cancer in her family, knowing whether she carries one of these genes is crucial to deciding her treatment. But that knowledge was locked up by Myriad’s patents—unless they were paid first, of course.

During the oral arguments in April, the Supreme Court justices used many metaphors to work out whether snipping a gene from the genome is a patentable act of invention, or a discovery made through the exploration of the human body. One example was that of a medicinal plant: a person couldn’t find a medicinal plant in the Amazon rainforest, clip a leaf and claim it as their intellectual property. How is snipping a gene from the human genome any different?

Today, genes are part of our cultural vocabulary and sequencing has becoming increasingly cheap. But in the late 1980s and 1990s, there was a global race among genetic researchers to hunt down the breast cancer-causing genes passed down through families. Genetic tools were rudimentary and picking out the location of a gene over the entire human genome was painstaking work. But Myriad researchers managed to pinpoint BRCA1—a mere 0.0025% of the length of the human genome—and snip the DNA segment out.

At the time, that may have seemed like a novel invention in a world that didn’t understand genetics. It seemed like something that the hardworking researchers should be able to profit from—such as the $3,000-$4,000 genetic test that has built Myriad’s empire of hundreds of millions of dollars.

But we think about genes differently now. We’re getting close to being able to sequence an entire human genome for a measly $1,000—40,000 times longer than the little BRCA1 gene. The tools for sequencing are becoming ubiquitous. As you read this, biohackers in Brooklyn warehouses are trying their hand at synthetic biology, copying DNA sequences and piecing them together to make something new. In this world, can a company really claim a smidge of DNA as their intellectual property?

No, the Supreme Court said. It cannot. “Myriad did not create anything,” the decision by Clarence Thomas reads. “To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention.” And, with that, human genes are no longer patentable.

Now we won’t have to fret that only the Angelia Jolies of the world can afford genetic testing to learn about what cancers or diseases we are more likely to get—or that we won’t be able to obtain a second opinion through an alternate test. In just one day since the ruling was made public, one company has begun offering a test for BRCA1 and BRCA2 for less than $1,000. And prices will drop further. University hospitals, which have their own sequencers on site, will be able to do even cheaper testing. We will all be able to peer inside our cells, read our genetic hands, and have the choice to do something—or nothing.

But in-hospital testing for BRCA and other high-risk genes is just a small slice of the pie. With the patents gone and sequencing getting faster and cheaper, more companies like 23andMe will be able to sequence thousands of genes without fearing lawsuits from patent-wielding biotech companies. These options are affordable and non-invasive, requiring just a cheek swab. No doctors, no hospitals— you’ll be able to analyze your genome from the comfort of your own home. And maybe one day, as we all become more genetically literate, we’ll sequence our own genes in biohack spaces, bypassing translators altogether.

Right now so much talk of genetics is shrouded in fear: Do you want to know what may eventually kill you? Will you be able to handle the truth? Are you going to make the wrong choices about your health? But these are the wrong questions. Genetic information gives people the ability to make informed choices, whatever choices they may be. Some may go full-tilt and take every preventative measure. Others may just scream “YOLO!” to the skies and smoke a pack a day. That’s the whole point: these are choices. And preserving genes as public property gives people the freedom to learn and make those choices for themselves.

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Tech-savvy women creating the content we want to consume (2013-2014). This collection is no longer accepting submissions, but email your pitches for publication on our many other awesome outlets to!

Thanks to Arikia Millikan

    Hannah Waters

    Written by

    Digs natural history and the way people think about nature. Smithsonian @OceanPortal producer, @SciAm blogger, @Ladybits contributor, Human.

    LadyBits on Medium

    Tech-savvy women creating the content we want to consume (2013-2014). This collection is no longer accepting submissions, but email your pitches for publication on our many other awesome outlets to!

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