Opt in or opt out? Battle over Minnesota’s newborn genetic screening law

The Minnesota Department of Health would regain broad authority to test and store blood samples from newborn babies under legislation that has pitted medical privacy activists against advocates of public health and medical research.

The bill, which has passed key committees in the House and Senate, would reverse the direction of recent court rulings, allowing the Health Department to retain blood samples for medical research unless parents specifically say no.

Physicians and state health officials say the tiny blood spots, typically drawn about 24 hours after a baby is born, allow early detection and treatment of dozens of hereditary illnesses, and then, once stored, help scientists study pediatric diseases.

Twila Brase, president of the Citizens’ Council for Health Freedom, who has emerged as an influential voice on medical privacy, said the bill would give the state unsettling power to store and use babies’ genetic information.

Read the full, original story: Data privacy activists decry bill to restore newborn blood sample storage

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