With Mother’s Day just around the corner, every mom remembers the day her baby was born as a time of joy, emotion and, at moments, feelings of stress and being overwhelmed.
But one thing most mothers might not think about in those first few days as a new parent is how their newborn baby’s DNA is collected, stored and used for research.
Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) wants to change that by educating parents about keeping their child’s DNA protected and private.
More than 10 years ago, CCHF began educating Americans on the use and storage of baby DNA without parental consent. In fact, CCHF successfully helped 21 Minnesota families win a lawsuit that required that all baby DNA specimens be destroyed by the state health department.
Unfortunately, the legislature changed the law and storage began again without parental consent on Aug. 1, 2014.
Over the years, federal and state laws have both extended parental rights when it comes to baby DNA, and also stripped mothers and fathers from protections for their baby’s very private genetic blueprint. Today, rules vary from state to state, with some not asking parents at all if they can collect, store and conduct research on the blood taken from babies’ heels at the time of their birth. These newborn screening tests check for certain genetic disorders, which is important for families, but some state health departments are creating large repositories of leftover identifiable newborn data, blood and DNA for research without further consent from the parents. That is not only alarming for moms and dads, it’s wrong.
Most states conduct newborn genetic screening on every newborn. Within 48 hours after birth, a few drops of blood from the baby’s heel are squeezed onto a special card, sent to a state lab and tested for up to 50 genetic disorders or more. While parents support newborn screening, most parents do not know it’s a state government program or that some states store and use the newborn’s bloodspots and test results without parental consent for purposes beyond newborn screening.
These bloodspots contain the private genetic makeup of the baby and should not be used, especially without parental consent, for research purposes. Therefore, CCHF urges parents who have a baby on the way, or who have recently welcomed a new addition, to research how their state utilizes baby DNA, how long they store it, if they use baby DNA for research purposes, and whether the parents can opt out of storage and research. CCHF invites parents the learn more about baby DNA at its website: www.ItsMyDNA.org.
CCHF has heard from many parents who were irate to learn of their state health department’s newborn DNA practices, and many were thankful to learn they have the choice to opt out.
Parents should be concerned that their baby’s genetic blueprint is being used and stored by the government.
A child’s DNA 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 on America’s tiniest citizens that should not be taken without fully informed consent or used for research purposes.
Twila Brase is president and co-founder of 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. Celebrating its 20th year, CCHF exists to protect health care choices and patient privacy.