ST. PAUL, Minn., May 19, 2020 /PRNewswire/ -- Citizens' Council for Health Freedom (CCHF) formed a nationwide coalition in support of Senator Lamar Alexander, Chairman of the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP), and his decision to protect the genetic privacy rights of newborns.
CCHF and 33 other organizations penned a May 14, 2020letter to Chairman Alexander thanking him for adding parental consent requirements to the Newborn Screening Saves Lives Reauthorization Act of 2019.
"We greatly appreciate that you have added language that will require parent consent for the use of DBS—newborn DNA—in federally funded research," states the coalition letter.
Newborn genetic screening is conducted on almost every newborn within 48 hours of birth. After delivery, the baby's heel is pricked and drops of blood are collected. These dried blood spots are then sent to the state's public health laboratory and tested for the 35 genetic conditions recommended by a national panel.
"Many parents have no idea that newborn screening happened. Even for those who do know, most don't realize that it's a government genetic testing program," said Twila Brase, president and co-founder of CCHF."They don't know that the government keeps the test results and can store, use, and secretly share the newborn's DNA for purposes unrelated to the screening program. All without consent from the child's parents."
In some states, the DNA-rich blood spots are sold. As CBS San Francisco reported in 2018, California sells newborn DNA to researchers for $20-$40 per blood spot, without parent knowledge or consent.
"What is being done to newborn citizens without their or their parents' consent could not be done to adult citizens," Brase said."Newborns deserve the same protections adults have against the government taking and exploiting their DNA."
CCHF has worked for more than 20 years to protect health care choices, individualized patient care, and medical and genetic privacy rights.