Professor Patricia J. Williams sees a clear line between academic research and R&D as it relates to DNA procurement and analysis. Writing for the Nation, Williams notes that last month the company 23andMe received its first patent for scientific research that might help in the fight against Parkinson’s disease. Williams hopes the company uses its newfound power for the good of all, especially those whose DNA contributed to this fresh information.
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 …
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.
Read Patricia J. Williams’ entire piece in the Nation.
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