"Parents approached for the project have reportedly been concerned about data privacy, potential bias from insurers who may equate genetic variants as preexisting conditions, and the uploading of their newborn’s data onto federal databases. I suggest the low enrollment underscores how a public fascination with genetics — half of parents on a previous survey said they were “very” interested in the project — is coupled with distrust in the commercialization of biotech, which is creating new social and economic inequalities...
“We were kind of taken aback,” Elias told me when I met him in 2013, not long before his death from cancer. “The rationale was that if someone carries a genetic mutation that is ‘actionable,’ meaning that doctors can do something about it, then the patients and doctors must be informed.” Elias and Annas believed the College was overreaching. Genetic mutations, or predictive markers, are often only “associated” with a certain disease. Elias was fulminating that the field was anxious to show off its dazzling abilities to use genetics, while many of the genetic variants might not be causative. “Once you have a hammer, everything looks like a nail,” Elias said. “Knowledge is seductive. That’s until we’re faced with knowledge that we’re all at risk.”"
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