The Minnesota Department of Health announced new measures Friday designed to address concerns that a program of blood screening for Minnesota newborns could violate patient and family privacy rights.
In a key step, the department will propose legislation this year giving it the right to keep infants' blood samples for two years, as part of a state database on disease treatment and prevention, then destroy the samples unless parents give consent for continued storage.
The department came under fire in 2007 from privacy advocates who said the newborn screening amounts to involuntary genetic testing and violates a state privacy law, and last year it unsuccessfully sought legislation clarifying the program's rules.
Each year, in conjunction with hospitals, the department screens roughly 70,000 newborns for 53 treatable medical disorders and hearing loss.
About 140 infants are found to have congenital or metabolic disorders where early detection and treatment can improve their health, department officials said, and another 150 receive early hearing-loss detection that can improve their later development.
The department will also work with hospitals to improve parent education on newborn blood screening and launch a website with additional parent information.
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