Did you know that the state of California keeps your baby’s blood sample forever? | Opinion

Newborn screenings are important for assuring the well-being and timely treatment of medical issues for infants. These screenings identify conditions that can impact a child’s health and even survival. Using a few drops of blood from the baby’s heel, researchers check for dozens of genetic, endocrine and metabolic disorders within days of birth. Screenings are mandatory in most states, including California. But what is done with the baby’s blood once the screenings are complete?

When I researched this question, the answer surprised me. My first child was born in New Mexico, which destroys blood samples at 18 months. California, however — where my second child was born — keeps the samples indefinitely. In this, California is an outlier and is one of only four states that holds them in perpetuity. Most states destroy the blood spots in a year or less.

California parents can request the destruction of their baby’s blood sample, but the process is neither timely nor transparent. Months ago, on September 13, I requested that the California Department of Public Health (CDPH) destroy my son’s sample. As of the time of writing, however, there has been no confirmation that my request was fulfilled.

The forever storage and use of these blood spots for third-party research presents various issues of concern. For one, most parents are unaware that samples are stored in perpetuity or that they are used by pharmaceutical corporations and others for research. The lack of informed consent for storage and research is another concern. According to a 2010 report by the Institute of Medicine, newborn screenings intersect with some of the most important health care issues of our day, including confidentiality, privacy and informed consent.

The ACLU has expressed concern about police using newborn genetic screening information to search for suspects who may be related. Each blood sample has the child’s unique genetic fingerprint, easily matched to existing genetic profiles held by law enforcement agencies as well those maintained by public-facing programs like 23andMe.

“Allowing the government to access samples with such sensitive information for reasons other than public health would seriously threaten our privacy,” an ACLU commentary piece states, “particularly given that our DNA reveals such information not only about us, but also our family members.”

A group of New Jersey parents recently filed a class-action federal lawsuit challenging the state’s practice of keeping newborns’ blood samples for decades. They accuse the state of sharing samples with third parties, including law enforcement, without proper consent. A lawyer for the plaintiffs stated that the ongoing storage and use of baby blood samples is a “clear violation of the Fourth Amendment rights of all New Jersey parents and their newborns.”

The Fourth Amendment of the U.S. Constitution guarantees that individuals have the right to be “secure in their persons, houses, papers and effects, against unreasonable searches and seizures” unless there is probable cause.

Along with blood samples being made available for law enforcement, California also provides the samples to researchers for a fee, yet there’s no transparency about how the samples are used and what is being researched. Similar to the well-known story of Henrietta Lacks, and the immortal cell line she unknowingly provided, if your child’s blood is used by a pharmaceutical company to create a blockbuster new drug, you and your child will never be alerted and will not receive compensation.

Now is the time to revise these practices in California to include strong protections for privacy and informed consent. The first step should be to set a time limit, perhaps copying New Mexico’s 18 months, when the samples will be destroyed, unless parental consent is given for further research. With trust in public health at an all-time low, that consent is vital to retain and build back trust.

This story was originally published December 16, 2023 at 6:00 AM with the headline "Did you know that the state of California keeps your baby’s blood sample forever? | Opinion."