CCHC releases "Newborn Rights" notification to assist parents of new babies during hospitalization

Document will help parents protect their baby's privacy rights related to newborn genetic testing, and state government storage of and research on newborn DNA

Minneapolis/Saint Paul – To give parents a tangible tool to protect the privacy and civil rights of their newborn babies, Citizens' Council on Health Care has released a "Newborn Rights" notification document for use during hospitalization. (see attached)

Citizens' Council on Health Care (CCHC) also released the following statement from CCHC's president, Twila Brase:

"Many parents have told us stories of the difficulties they've had trying to protect their newborn babies while at the hospital. Often the hospital staff knows nothing about the options parents have under the Minnesota newborn genetic testing law. Most don't even know about the Minnesota genetic privacy law and its written consent requirements. Some mothers and fathers have awakened to the sound of their baby crying, only to learn that the baby's blood had already been taken without their consent.

"To help parents protect their children, Citizens' Council on Health Care is today releasing a notification form for parents to use in the hospital after the delivery of their baby. This simple form can be copied and posted on the door, taped to the bassinet, or placed wherever the parents think best. It can be handed to staff and used by the parents to notify the lab technicians, nurses, and doctors that they want to be contacted before anyone takes blood from their baby's heel.

"For six years, CCHC has been calling on the Minnesota Department of Health to fully inform parents of their right to protect their newborn's genetic privacy and DNA property rights. The Department has steadfastly refused. They have also failed to follow the required informed written consent requirements of Minnesota's genetic privacy law. Last year, they sought to exempt themselves from the law, and when they were unsuccessful, they continued to violate it. To this day, there is no consent form, and the warehousing of baby DNA continues unabated.

"Today, more than 815,000 children have their DNA warehoused in the Minnesota Department of Health and more than 1.5 million children have their genetic testing results in a health department database. Over 52,000 children have been the subjects of genetic research without their parent's knowledge or consent.

"Until the state health department begins to respect the civil and statutory rights of babies and families, we will do all we can to help parents protect their children's genetic privacy and DNA property rights before they are stolen by the Minnesota Department of Health."

Media Contact:

Twila Brase, President
Phone: 651-646-8935 (office)
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