Coffee Cup Sample
Such guidance is needed because, as the report notes, only about half the U.S. states offer protections against surreptitious commercial testing. Those protections vary among states: It is legal in many states, the report says, to pick up a discarded coffee cup and send a saliva sample to a commercial sequencing facility to discover an individual’s predisposition to, say, neurodegenerative disease. That data could be misused, the report correctly warns, by a contentious spouse as evidence of unfitness to parent in a custody case.
“I don’t know that that’s the most significant risk in the real world, but it’s definitely evocative of the problem. You don’t want to be afraid that you can’t touch anything or leave any of yourself behind without some snoop coming around and then learning everything about your genetic destiny,” Jonathan D.J. Loeb, Ph.D., a partner in the law firm Dechert, told GEN.
Instead, the report recommends only that the federal and state governments develop a process for hammering out “a consistent floor of protections” covering whole-genome sequence data regardless of how they were obtained. These policies, the commission said, should protect individual privacy by prohibiting unauthorized whole genome sequencing without the consent of the individual whose sample is being examined.
“What we envision is a group consisting of federal and state experts and members of the informed public coming together, and determining how to get a consistent baseline most efficiently and effectively,” said Amy Gutmann, Ph.D., commission chair and president of the University of Pennsylvania, answering a GEN question during a briefing for reporters.
She said that can be accomplished either through federal law or a patchwork of state laws.
“It’s our job as a commission to ask the federal and state governments to step up to the plate and make sure it happens, and inform the public of the need for it to happen,” Dr. Gutmann added. “We are not a legislative body.”