Twenty-one families sued the state over medical privacy rights regarding the long-term storage of blood samples taken from newborns to screen for illnesses and study genetic diseases, saying the department illegally stored the samples without parental consent, according to the report.
After collecting the blood samples and testing them for diseases, the department kept them indefinitely for research purposes unless parents opted out.
Under the new legislation following the law suit, the department can still obtain blood samples from newborns but are limited in how long they can keep them: seventy-one days if the sample comes up negative and two years if the sample is positive or abnormal, unless parents give consent for the department to keep the samples longer.
Jim Koppel, deputy health commissioner, said destroying the samples is “regrettable” because they provided the state with significant data for research and have helped expand the list of diseases to test for in newborns.
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