Risk of Privacy vs. Risk of Disease

Children’s Hospital of Philadelphia announced today it is going to collect DNA samples of perhaps 100,000 patients in the next three years. Parents, of course, will have to consent, and there will be safeguards to anonymize the records. The purpose is to collect enough DNA to be able to build evidence as to which genes are implicated in which diseases that doctors would then be able to routinely screen everyone for.

Although they can’t give consent, children are ideal for this kind of data collection because whatever put them in the hospital in the first place was not caused by their environment or by aging.

One concern is the potential for medical profiling by race. But would it not have been helpful to know a long time ago that younger black women with breast cancer often have a more severe type than older blacks and white women?

Three years ago, Aetna, Inc., decided to identify every new plan member by race, and what its chairman, Dr. John Rowe, said then, may apply to this debate as well: “There are reasonable concerns about gathering data, but that’s not reason enough not to do it. We can’t provide interventions for people at risk if we don’t know who they are.” Or, in this case, what they have.

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