Federal Genetic Profiling of Newborns?


September 4, 2013


The government wants every baby’s genetic code. Today the National Institutes of Health announced federal grants totaling $25 million over five years to four institutions to develop a process to sequence the genome – the DNA – of every child at birth:

  • Brigham and Women’s Hospital, Boston, MA
  • Children’s Mercy Hospital, Kansas City, MO
  • University of California, San Francisco, CA
  • University of North Carolina at Chapel Hill, NC
Genomic testing would revolutionize newborn screening -- but not in a good way. At birth, the newborn’s DNA would be taken by the hospital and sent to the government (as it is today). There the genetic code would be analyzed, dissected, reported, and filed with the government. Every gene, every genetic sequence in the baby’s DNA would be on record.
Newborn screening is already genetic testing, but it’s quite limited in scope.
Today’s newborn screening searches the baby’s blood for specified, limited newborn genetic conditions for which there is a cure or helpful immediate care. These genetic conditions often have complex names such as “Trifunctional protein deficiency” or “Cmethylmalonyl-CoA mutase deficiency.”
However, if newborn screening becomes newborn genomic sequencing, every child will be tested for the likelihood of getting every disease under the sun – from migraines to melanoma, from childhood-onset to adult-onset conditions. As federal official Alan E. Guttmacher says, “Genomic sequencing has the potential to diagnose a vast array of disorders and conditions at the very start of life.”

When a reporter from Nature magazine, one of the the top scientific journals in the world, called me yesterday for a comment on the grants, I warned about the dangers. For instance, even if asked for their consent, parents may not be fully informed about the long-term ramifications of being handed a comprehensive genetic analysis of their child. In addition, the child who grows up to hear that their DNA was sequenced by the government without their consent may not like it. Once sequenced, there is no turning back. Genetic privacy once lost cannot be regained. The data will be entered into the child’s permanent medical record accessible to 2.2 million entities—and into the government’s newborn screening database.

I also discussed a study that revealed the “collateral damage” of newborn screening as it exists today, before full sequencing is even considered. In short, as more conditions are tested for, the number of “false positives” rises. These are results which claim the child has a genetic condition, but are actually incorrect (false).
The study found that parents of children who receive “false-positive” diagnoses of newborn conditions treat their children differently. Even if a second test reveals the child has NO evidence of a genetic condition, the parents are not convinced. They worry that the first test was actually correct, not the second. The study found parent-child bonding is jeopardized, children are needlessly sheltered from normal life experiences, and some are are fed differently long after the threat of getting the condition is over.
As the study’s author says, “Years after everything appears to be fine, parents are still very worried.” He calls these children, “patients-in-waiting.”
Newborn screening must never become newborn genomic sequencing. Data is power. Imagine where this type of comprehensive genetic analysis of the 4 million children born each year could lead in the era of cost-containment, genetic manipulation, and designer babies.
Even today, most parents know little about newborn screening. For instance, they typically have no idea that newborn screening is a government genetic testing program. Many don't even know it was even done. (See our recent report on government health surveillance).
As parents learn the facts about newborn screening (government testing; state storage and ownership of baby DNA), some parents refuse to have it done and others seek private testing. Therefore, if government officials are truly concerned about the welfare of America’s children, they should not convert today’s limited newborn screening into a comprehensive genomic sequencing program. No government should be able to analyze every newborn’s potential to be healthy, gifted, weak, disabled or diseased.
But federal officials want American genetic codes on record. And so $25 million from taxpayers will be spent to build a DNA sequencing system that allows the government to analyze the genetic weaknesses and strengths of its citizens at birth. This system could be used to separate the strong from the weak even if genetic testing is only predictive, not prescriptive. The sequencing results could be seen as genetic “truth” even when they’re not. As an example of the potential impact of these results on individual opportunity, watch the movie Gattaca.
Our DNA is our private property. It’s the blueprint of who we are. Opening our DNA up to the government at birth is a mistake. The $25 million Genomic Sequencing and Newborn Screening Disorders research program should be defunded. Call your member of Congress today and say so. We should not ever let state and federal officials get their hands on our genetic codes.
Working with you for health freedom,
Twila Brase, RN, PHN
President and Co-founder