Utah puts stop to secret data collection of infant DNA, gives control to parents

House Bill 363, which was sponsored by GOP lawmakers Rep. Candice Pierucci and Sen. Heidi Balderree, stated that the state Department of Health and Human Services "may retain, in accordance with the department's retention policy, a biological sample and any genetic data ... only if a parent or guardian consents to" the action by clearing the collection of the information on a consent form.

The bill passed in the state House and Senate with an overwhelming majority in both parts of the state legislature and was signed by Utah Governor Cox earlier this year.

The policy is the first in the nation that outlines that a child's DNA cannot be used in research or studying without parental consent.

Balderree told The Post Millennial, "As a mother of four, I find the idea of a pregnant woman in restraints unthinkable. HB363, sponsored in the House by a young mother who herself has been a pregnant legislator, strikes the right balance of privacy and protection."

The bill also contains a number of other measures regarding protocols for newborns. Balderree said the bill also requires "that every newborn be tested for hearing loss provides parents with crucial knowledge at the earliest stage, regardless of the size of the hospital where the child is born. The new privacy consent form for newborn heel stick screening empowers parents to make informed decisions, while clear safeguards on genetic data—ensuring samples are destroyed unless parents consent to retention—honor the principle that individuals inherently own their personal information from birth."

The bill also requires "correctional facilities to offer pregnancy testing to every woman upon admission” but the test is not required.

Citizens’ Council for Health Freedom (CCHF) co-founder Twila Brase applauded the policy move from Utah, and stated, “For years, state health departments have secretly stockpiled and shared Baby DNA without parental knowledge or permission."

Brase added, “Utah has taken a critical step to protect the privacy of every child and restore the rights of parents to decide what happens to their baby’s genetic blueprint.”

Utah State Rep. Trevor Lee, who voted in favor of the bill, told The Post Millennial, "With more and more couples struggling with infertility, and more of our information getting pushed all over the place. I’m glad we’ve been able to protect the private information or parental rights of their kids. Whether it’s IVF or just making sure we can’t play God with DNA. That all needs to stay in the control of those parents that created sample."

Around the nation, parents have also been taking states to court over the issue in bids to protect their children's privacy.

In Minnesota, parents sued the state in 2009, which led to the destruction of 1 million newborn DNA samples. Parents in Texas have sued twice over the issue. Parents in New Jersey also sued to stop the storage of newborns' DNA, but last week, a judge ruled against parents in the case.