Opinion: Newborn blood retention policy raises constitutional concerns in Utah

Rather than destroy the paper cards used to collect bloodspots for newborn testing, Utah keeps the samples without telling parents, creating a secretive database with potentially millions of entries …

New parents are careful who they invite into the hospital room after a delivery. Doctors and nurses have permission to enter. Friends and family, too. But what about police officers, for-profit research companies and the Pentagon?

Under state law, all of these third parties have backdoor access to the blood of every Utah child. The intrusion starts within 48 hours after birth, when maternity ward workers prick an infant’s heel to collect blood for laboratory testing.

The mandatory screening allows for early detection of rare conditions like cystic fibrosis and sickle cell disease. This testing is uncontroversial. All states do it — and the results no doubt save lives.

But afterward, rather than destroy the paper cards used to collect bloodspots, Utah keeps the samples without telling parents, creating a secretive database with potentially millions of entries.

Parents cannot opt out. Once the Utah Department of Health receives the paper cards, state law says the blood becomes the property of the state. If parents refuse to participate, they can face charges of medical neglect.

Utah currently keeps the blood for seven years. But information from the paper cards remains on file for 22 years. The state does not say precisely what happens during this period, but the potential for abuse is high.

Plaintiffs caught Texas officials turning over DNA data to the Pentagon for a national registry. Michigan was selling newborn blood for research. So was Minnesota. Court rulings forced all three of these states to stop.

More recently, New Jersey was caught turning over infant blood samples to police agencies without a warrant, leading to criminal charges for at least one father. Our public interest law firm, the Institute for Justice, represents New Jersey parents in a class-action lawsuit to stop the abuse.

Erica Jedynak and another New Jersey mom are leading the fight. Jedynak says she was blindsided when she learned the state was keeping her son’s blood for unknown purposes.

“There is something morally not right that the government would be tracking him or almost assuming the guilt of babies,” she says. “I have to protect him from what appears to be a very creepy database.”

The Constitution provides ammunition in her fight. The Fourth Amendment guarantees the right to be secure against unreasonable searches and seizures. If states want to keep blood in a government database, it can. But first, the state needs a warrant or parental consent.

The first option is a nonstarter. No judge would sign off when no crime has occurred. This just leaves consent. To satisfy the Constitution, this consent must be voluntary, informed and obtained before a state retains blood.

Some jurisdictions respect parental rights in this way. Indiana, for example, asks parents whether it can retain their children’s bloodspots for specific medical research purposes. If parents decline, their child’s bloodspot is destroyed.

Delaware and South Dakota enforce similar policies. But holdouts, including Utah and New Jersey, remain. In both states, the government has taken the choice about retention away from parents, claiming the government should automatically keep the blood of every child in a state-run facility.

Technically, New Jersey parents can opt out by asking the state to destroy the bloodspot. Utah previously allowed this, but the state no longer accepts requests for destruction because it says the policy is “undergoing legal review.”

Courts in other states have rejected the “opt-out” model. As a Michigan judge explains: “The silence of (parents) might well have been the product of the opacity of the system, the infants’ nascent existence in the world, or the result of the overwhelmed state of their new parents.”

In other words, parents cannot opt out of something they do not know exists.

Utah must fix its unconstitutional retention program. Blood belongs to the individual, not the state.

Source: Utah News