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Loss of Privacy: Government Collecting and Storing DNA Samples of Newborn Babies – Available to Law Enforcement and for Medical Research

Did you know that it is now common practice in all 50 U.S. states to collect DNA samples from all newborn babies and store them in data banks, which can later be made available to law enforcement or doctors wanting to do medical research? These DNA samples are contained in blotted blood spots from babies’ pin-pricked heels taken within hours of birth. The storage length legally allowed for newborn DNA blood spots varies from state to state, from as little as three months to indefinitely. Federal law, through the agencies of The Maternal and Child Health Bureau (MCHB), a branch of the National Health Resources and Services Administration (HRSA), requires the blood spots be taken for research purposes in all 50 states. Twila Brase, RN, PHN, co-founder and president of CCHF, Citizens' Council for Health Freedom states: "That which the government holds, the government owns. A child’s DNA held by the government could be sequenced, meaning a baby’s genetic code could be completely detailed and mapped—and then recorded in a state government database, used and shared. This is private information America’s tiniest citizens, who will grow into adults stripped of their genetic privacy when they weren’t able to protect themselves." Recent media reports about law enforcement using these stored DNA samples to hunt down suspected criminals have brought this issue of privacy and consent over stored DNA samples from infants to the forefront of the public. If you choose to have your baby born in a hospital setting, it would be wise to know what your state's policy is on DNA samples collected, and what your options are.

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Newborn Blood Screening without Parental Consent Bill Proposed in Congress

The U.S. House of Representatives is voting on the Newborn Screening Saves Lives Reauthorization Act of 2014 (H.R.1281), which would extend for five years the funding program that allows states to collect and store newborn DNA without parental consent. The bill, sponsored by Rep. Lucille Roybal-Allard (D-CA-40) is purportedly meant to improve health for newborns and children by allowing for detection of potentially life- and health-threatening genetic conditions. But Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org), a Minnesota-based national organization dedicated to preserving patient-centered health care and protecting patient and privacy rights, says the legislation is a back-door effort to bypass parental rights, collect and store newborn DNA and expand government access to the genetic code of Americans. “In the name of public health, this legislation continues a program that strips parents of their right to have a say in who holds their child’s genetic code, strips children of their privacy and property rights, and institutionalizes national data-sharing among federal and state governments,” said CCHF co-founder and president Twila Brase. “It’s one thing for newborn blood samples to be tested for a specific set of newborn genetic conditions; it’s entirely another for the government to grant itself the right to store that data and those DNA samples indefinitely, to use them for genetic research without parental knowledge or consent, and to place virtual tracking devices on every child by following their health history into adolescence. Yet, these are exactly what this bill does.”

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