For Immediate Release
May 15, 2017
Beth Harrison, Hamilton Strategies, 610.584.1096, ext. 104, Media@HamiltonStrategies.com, or Deborah Hamilton, 215.815.7716, 610.584.1096, ext. 102
Which States Are the Worst Offenders for Storing Baby DNA?
Citizens’ Council for Health Freedom Educating Parents About the Collection, Storage and Research Practices in their State—and How to Opt Out—Through CCHF’s Website ItsMyDNA
ST. PAUL, Minn.—Parents want to keep their children safe, and that may mean having their newborn baby tested for genetic disorders at the time of birth. But another important aspect of parenting is keeping the genetic information of newborn babies private and protected.
Many parents are unaware that after their baby’s heel is pricked at the hospital, the bloodspots are sent to the state for newborn genetic screening and may be stored for years, or even indefinitely, in some states. And parents most likely never consented to this storage or the fact that bloodspots may be used for research in the future.
More than a decade ago, Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) began educating Americans on the use and storage of baby DNA without parental consent. In fact, CCHF efforts led to successful parent lawsuits in Texas and 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, keeps up to date on the always-changing federal and state regulations that impact how baby DNA is collected and used for research—without parent consent.
“In the name of public health, the government pours millions of taxpayer dollars into state programs that strip parents of their rights to have a say in who holds their child’s genetic code, denies children their privacy and property rights, and institutionalizes national data-sharing among federal and state governments,” Brase said. “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, to claim government ownership of citizens’ DNA at birth, and to make newborn citizens vulnerable to lifelong government intrusion in their private lives.”
CCHF has been tracking the storage of “Baby DNA” for more than a decade. On its special website dedicated to protecting baby DNA, ItsMyDNA.org, CCHF lists every state and their year-to-year practices for storing baby DNA through specimens, bloodspots and test results. The worst offenders store this private genetic information, sometimes without parental consent, for many years—until the child is in grade school to after they graduate from college—or even indefinitely.
The process begins with newborn screening. Most states conduct newborn genetic testing 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.
States that store this private genetic information the longest (as of 2016 information) include:
- 5 to 20 years: Connecticut, Florida, Illinois, Iowa, Massachusetts, Missouri, North Carolina, and Virginia
- 20+ years: Maryland, New Jersey, New York, Rhode Island, Texas, and Washington
- Indefinitely: California, Louisiana, Maine, Michigan, Minnesota, North Dakota, Tennessee, and Vermont
CCHF has heard from many parents who were irate to learn of their state health department’s newborn DNA storage and use practices, and many were thankful to learn they have the choice to opt out. At ItsMyDNA.org, CCHF also offers opt-out forms and further information for Michigan, Minnesota, Missouri, New York, South Carolina, Texas and Washington.
Several parents have shared with CCHF that they were never informed about state DNA storage practices, or were made to feel embarrassed or humiliated when they asked about opt-out forms.
One Minnesota father shared that in the uncertain time in the hospital, he and his wife were not told about how their baby’s DNA would be stored.
“The 48 hours in the hospital setting for a birth is a zoo,” he wrote to CCHF. “Everyone’s coming in at all hours. My wife was hardly left alone. In fact, for our fourth child, my wife says it was such a blur that she can hardly remember choosing our son’s name. I can guarantee that both she and I would remember if a four-page document had been placed in front of us explaining why the (Minnesota Department of Health) was going to store my son’s DNA for its own purposes following the PKU (phenylketonuria) testing. No such information was provided, not even a paragraph. Indeed, I didn’t learn about the MDH’s practice until … six months after my son’s birth. And I had to learn about it from a nonprofit organization concerned about the rights of citizens in this state. That, to me, is utterly disturbing.”
Another Minnesota mother shared that she was never given the opportunity to opt out of state storage practices, but was informed enough to ask, even during a stressful time.
“For our first three children, I was NEVER showed any information in the hospital, making me aware of the storage of my babies’ DNA samples. There was no paper in my stack that explained what was going to happen with this blood sample, and there was no paper provided saying I could opt out, until our newest child was born … only because I REQUESTED it (since) I now knew about what has been illegally going on.”
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.