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Genetic Discrimination Collins: Personalized medicine requires changes in policy


To many members of the genomics community, the idea of one day developing a healthcare system based on personalized medicine seems like a worthy goal. After all, the ability to predict which patients are more susceptible to certain diseases or which patients will respond to a specific drug should help patients be more vigilant about their health and more effectively treat those who do get sick.

Alas, as was apparent at a public forum in mid-April at Rockefeller University in Manhattan discussing “Life in a Post-Genomic World,” there are many complicating factors. NHGRI Director Francis Collins highlighted the many potential advantages of applying a more thorough understanding of the genetic basis of disease to healthcare, but at the same time he stressed the dangers associated with unbridled access to this information. Collins has repeatedly come out strongly in favor of legislation ensuring that patients’ genetic information remains out of the hands of those — like insurance companies — who might discriminate against people on the basis of their genomes. But as he noted at the forum, a bill to do exactly that remains stalled in the House of Representatives, and could potentially expire if Congress does not act on the legislation before the end of its session.

To those who argue that privacy concerns are overblown, Collins counters that society shouldn’t wait for specific examples of genetic discrimination to occur before enacting some degree of protection. “We can see the train coming down the track — why wait until there are many examples of injuries?” he says. “We can’t wait. We need protections now.”

Paul Nurse, Rockefeller’s president, took his concerns about personalized medicine one step further. Better understanding a patient’s risk for disease makes sense in the context of the doctor-patient relationship, he says, but not necessarily when health insurance is based on a system that strives to spread the cost of healthcare among a large population of people. When an individual’s risk for contracting a disease is known, he says, what incentive does a private insurer have for offering coverage? Nurse, who hails from the UK, notes that pinpointing individual risk would not pose a problem with a socialized health care system, in which society has agreed that all citizens deserve coverage.

— John S. MacNeil


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