For Immediate Release
May 9, 2017
Beth Harrison, Hamilton Strategies, 610.584.1096, ext. 104, Media@HamiltonStrategies.com, or Deborah Hamilton, 215.815.7716, 610.584.1096, ext. 102
Moms, Do You Know Where Your Baby’s DNA Goes?
Citizens’ Council for Health Freedom Urges Moms and Dads to Learn More About Parental Consent Protections for Baby DNA at ItsMyDNA.org
ST. PAUL, Minn.—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 parent consent on Aug. 1, 2014.
Twila Brase, co-founder and president of CCHF, regularly follows the ever-changing federal and state regulations that impact how baby DNA is collected and used for research—often without parents ever realizing it.
“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,” Brase said. “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.
Brase advised that 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.
Brase added that 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,” she said, “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.”
CCHF, a patient-centered national health freedom organization based in St. Paul, Minn., existing to protect health care choices, individualized patient care, and medical and genetic privacy rights, was instrumental in the hard-fought—and successful—passage of language in the “Newborn Screening Saves Lives Reauthorization Act of 2014,” which required parental consent for federally funded research using newborn DNA. However, these consent requirements within the newborn screening law, signed on Dec. 18, 2014, by President Barack Obama, were eliminated with the January 2017 revision of the Common Rule.
CCHF’s initiative, The Wedge of Health Freedom (www.JointheWedge.com), is using third-party-free direct payment to transform the entire health care system back to freedom and restore simplicity, affordability and confidentiality. Nearly 200 Wedge practices, where patients can find affordable, patient-centered care, are located in 44 states and listed online.
CCHF is a national patient-centered health freedom organization existing to protect health care choices, individualized patient care, and medical and genetic privacy rights. For more information about CCHF, visit www.cchfreedom.org, its Facebook page or its Twitter feed @CCHFreedom. Also view the media page for CCHF here. For more about The Wedge of Health Freedom, visit www.JointheWedge.com, The Wedge Facebook page or follow The Wedge on Twitter @wedgeoffreedom.
For more information or to interview Twila Brase of Citizens’ Council for Health Freedom, contact Beth Harrison at 610-584-1096, ext. 104, Media@HamiltonStrategies.com, or Deborah Hamilton at 215-815-7716 or 610-584-1096, ext. 102.