Cow D lived on a dairy farm in New Zealand. The animal looked like the typical black-and-white cow farmers raise for milk, except for one thing: Researchers had outfitted Cow D with an artificial fistula — a hole offering them a way to reach the microbes inhabiting the animal’s bathtub-size stomach. But it’s what happened next that offers a porthole into the global debate over the use of genetic data.
In the spring of 2009, Samantha Noel, then a doctoral researcher at Massey University in Palmerston North, New Zealand, reached into Cow D’s rumen and plucked out a strain of Lachnospiraceae bacterium, later dubbed ND2006. Another team of geneticists sequenced the microbe’s complete set of genes, or genome, and uploaded the information, which was then shared with GenBank, a public database run by the U.S. National Institutes of Health. If genes are the book of life, then this process was like adding a digital copy to an online library. In policy circles, these lines of code go by another name: digital sequence information, or DSI.
Eventually, a section of the sequence found inside Cow D caught the attention of scientists on the other side of the world. The sequence contained a promising new genetic tool for modifying DNA, a CRISPR. Editas Medicine, a Massachusetts-based company focused on commercializing gene-editing technology for medical applications, used these data to build its platform and now holds the license on a portfolio of patents — all without ever interacting with the cow or its microbes directly. The company subsequently developed an experimental therapy, which involved injecting a modified CRISPR-associated molecule into patients’ eyeballs to treat a common form of inherited blindness. Editas billed the breakthrough as the first such treatment “administered to people anywhere in the world.” The results, published in the New England Journal of Medicine, contain little mention of any sequence data and even less about its origins.
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