Do You Belong to You?

January 10, 2018
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Johns Hopkins pediatrician, attorney, and bioethics scholar Michelle Huckaby Lewis points out that, at the time, neither federal nor Texas law required parental permission for research use of the dried blood spots. She says that the law now requires parental consent, and dried blood spots are now legally considered to be “human subjects” for the purposes of research. (After the Texas case settled, lead plaintiff Andrea Beleno told The New York Times, “The irony is, if you had asked me, I probably would have consented.”)

Contreras offers a potential solution to the barriers created by ownership of samples and data, and by requirements that researchers ask for either permission or forgiveness. He would like to see the U.S. transition from a property-based system that empowers research participants to say “get off my lawn,” thus potentially slowing the pace of research, to a system based on liability. In such a system, he says, researchers who behave badly toward participants would be punished. But the research, assuming it met all of its other obligations, could continue.

“Suppose that, while you’re sleeping, I take a saliva swab from your cheek, sequence your DNA, and upload it to a public database like GenBank,” says Contreras. “In a property-based system you can get that data erased from GenBank [and research suffers]. [But] in a liability-based system I am penalized and maybe I’m debarred [for taking your sample without permission]; I might suffer all sorts of severe penalties. For example, maybe I’m not allowed to do research [at all]. But the data, once it’s out there, [I think it should continue] to be used.”

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