How Our Genetic Maps Are Being Sold to the Highest Bidder
Who owns our bodies? One of the weirder cases exploring this bioethical question involved South Carolinian John Wood, whose leg was amputated after an airplane crash in 2004. Wanting to be buried “whole” eventually, he had the leg embalmed and placed it in a storage unit with other belongings. But he fell behind on the rental fees, and the contents of the unit were sold to one Shannon Whisnant, who found the leg carefully wrapped and nestled inside a barbecue smoker. Whisnant called the police, who traced it back to Wood. Wood insisted the leg be returned given his sincere belief that, detached or not, it was part of him. Whisnant, however, claimed that he was the purchaser-for-value and hoped to put the leg on display and charge a hefty price for the viewing. “Halloween’s just around the corner,” he explained.
The ghoulishness of this situation should not obscure the legal issues at stake: should a commodity interest in the contents of the storage unit trump the sacrosanctity of corporeal integrity? Are discarded body parts “alienable”? Or do they fall in the realm of what we deem constitutionally “inalienable”? A devastating disease.
What about DNA? Suppose we assumed that Wood’s genetic makeup included cells that were resistant to AIDS. Do Wood or Whisnant have any proprietary claim to profits to be derived from the extraction, culture and sale of those cells? Could Whisnant not only display the leg but also publish Woods’s entire genome as part of his Halloween show? Could the police officer to whom Whisnant brought the leg do a DNA test, retain the sample, patent a method of assaying the extracted data and ultimately market a pharmaceutical byproduct to patients at $5,000 a dose? We all leave a trail of hair and hangnails wherever we go—under what circumstances should that material be regarded as discarded and thus open for exploitation by finders-as-keepers?
At the end of May the personal genetics company 23andMe announced that it had procured its first patent, for “Polymorphisms Associated With Parkinson’s Disease.” Patents create exclusionary rights in knowledge; they prohibit non–patent holders from using that knowledge without permission or the payment of royalties. 23andMe’s patent stems from massive aggregations of data culled from customers who have paid considerable money for information about their genetic predispositions for various health risks. While 23andMe’s consumer contract says that no “research” on submitted spit samples shall be done without consent, many customers seem not to realize that “research” is defined as purely “academic”—which is to say, work published in “peer-reviewed scientific journals.” The contract then distinguishes “research” from “research and development (R&D)” of commercial products—for which no consent is needed.
When announcing news of the patent, CEO Anne Wojcicki declared that she wants “discoveries to move from the realm of academic publishing to the world of impacting lives by preventing, treating or curing disease.” But it is precisely in academic publishing that new ideas are most apt to be freely shared and tested; Wojcicki seemingly wants to dislodge discoveries “from” academia “to” the gated community of patent law—simultaneously designating patent law as the exclusive geography of disease prevention, treatment and cure. As she explains, “Often the only way a company will even think about pursuing a drug lead is if they have assurance that they can recoup their investment.”
Wojcicki frequently expresses her desire to heal and to broadly share the knowledge gained through data mining. Readers may know that she is married to Google co-founder Sergey Brin, whose family history of Parkinson’s disease places him at risk. But that backstory, compelling though it may be, is not reflected in the business model either of them pursues—nor should anyone expect it to be. As with any for-profit corporate head, their fiduciary duty is to make money. The realization of any wider, or public, interest in healthcare will not come from the private corporate sphere by itself.
The patent system, as well as our corporatized system of R&D, assures that the real wealth of data-aggregating businesses will come not from analyzing individual spit samples but from the far greater asset of bundling customers’ genetic, lifestyle and family history for commercial exploitation. In 2010, when classes at Stanford and Berkeley held “spit parties” to analyze students’ genetic material, I wrote in these pages that “we should be more thoughtful about the ends for which our bodies are being mined. The redemptive thrill of being co-creators of some medical miracle must be measured against the possibility that we are rendering fungible that which most profoundly distinguishes us and…enabling a commodity exchange in which important aspects of our identities will be sold to the highest bidder.”
I hope 23andMe will consider how better to channel its discoveries into nonprofit, low-cost treatment for all—or for its “direct consumers,” at the very least. It’s hardly a new ethical challenge. Consider The Immortal Life of Henrietta Lacks, by Rebecca Skloot. Lacks was a poor black woman who suffered from a unique form of cervical cancer, to which she succumbed in 1951. While she was at Johns Hopkins, her doctor removed some of her cancer cells, cultured them in a petri dish and distributed them for research purposes. It was the first “immortal” human cell line, and it has been the foundation for billions of dollars’ worth of medical and pharmaceutical discoveries. Neither Lacks nor her family was informed of the removal of her cells or the profit derived from them. When Skloot located Lacks’s children and grandchildren, she found a family still poor and without healthcare. Skloot’s response was to set up a nonprofit foundation that provides emergency healthcare and medical scholarships to those in need. Donations may be made by visiting henriettalacksfoundation.org.