CCHC Releases New Report Challenging State Newborn Screening Programs

CCHC calls for informed written consent requirements, citing concerns of experts in genetics and bioethics

Minnepolis/Saint Paul -- As National Newborn Screening Awareness Month is about to come to an end, Citizens' Council on Health Care (CCHC) today releases a report that challenges state-mandated newborn screening programs: The Untold PKU Testing Story...and Why it Challenges Government-Mandated Newborn (Genetic) Screening.

Revealing the untold history of government-mandated PKU testing, which has harmed children and increased the incidence of mental retardation, the CCHC report also cites the concerns of experts regarding the current expansion of newborn genetic testing by state legislatures and health departments.

Concerns include:


  • comprehensive genetic testing of infants using DNA chips
  • violation of the child's right "not to know"
  • potential for discrimination
  • involuntary participation in genetic research
  • eugenics

As Adam Schulman, Ph.D. cautions in his 2008 report for The President's Council on Bioethics: "The specter of 'eugenicide' hovers over the eagerly anticipated marriage of newborn screening with genomic medicine."

"The pricking of a child's heel at birth is serious business," says Twila Brase, president of CCHC, and author of the report released today.

" To protect their child from the negative consequences of newborn screening, every parent must be given the right of informed consent," she says. "Every parent must be told that newborn screening is the genetic testing of their child by state government. And every parent must be told that the results of newborn genetic testing become part of their child's permanent medical record—and potentially part of a permanent government record."

Only two states require informed parent consent. (A table of all 50 states and Washington D.C., including number of conditions tested in each state, can be found in the CCHC report)

"Medical and ethical standards require that physicians obtain informed consent before conducting genetic tests on patients. For the protection of children and families, informed consent standards must be adopted by every state newborn genetic testing program." says Brase.

The CCHC report contains seven recommendations for action, including informed written parent consent requirements, and providing individuals with DNA property rights.

Report in Brief

Media Contact:

Twila Brase, President and Co-founder
Office: 651-646-8935