Questions Over California’s Newborn Screening Program

KTVU, a San Francisco Bay Area television station, ran a special report last week on California’s newborn screening program. As in many states, every child born in California goes through a mandatory screening process for 77 genetic diseases that can often be treated if detected early.  

Parents and children certainly benefit from this often lifesaving program. But the KTVU special report highlights the extent to which parents are unaware that the blood spot cards are kept on file by the state. Indefinitely.

Storing genetic material and sharing it with other researchers raises important issues of informed consent. The state is obligated to tell parents that their child’s blood spot card may be retained for research purposes. But, as one parent told KTVU,

They might have given me a piece of paper, but it was right after the birth. We were tired. There was so much going on we didn't have time to read anything.

The KTVU special report voiced skepticism towards government retaining this information and using it for purposes other than those directly beneficial to the newborn child.  To be sure, Director Fred Lorey at the California Genetic Disease Screening Program told KTVU that they started keeping newborn blood spot cards after they were screened not because there is some ongoing benefit to the newborn child, but simply “because they could.”

The segment also draws attention to health care activists’ and new parents’ concern over privacy. One parent told KTVU, “I don't trust the government anyway. I don't trust that they're honest and tell the truth.” The state’s lack of candor certainly rubs many people the wrong way. But is there really anything to worry about?

Earlier this year, The Texas Tribune reported on a similar program where the shady handling of newborn blood spot cards led to a lawsuit and settlement. Texas health officials were sued in 2009 for storing newborn blood spots without parental consent. Initially, they said they stored the samples for research. But, it was quickly discovered that they were sharing the samples with the federal government to build large forensic databases. The Texas Tribune notes,

Between 2003 and 2007, the state gave 800 de-identified blood samples to the Armed Forces DNA Identification Laboratory (AFDIL) to help create a national mtDNA database.

 . . . AFDIL scientists, in conjunction with the research branch of the Justice Department, approached Texas in a $1.9 million effort to expand the country’s mtDNA database — part of the President’s DNA Initiative launched under George W. Bush. The researchers wanted “anonymous and maternally unrelated” blood samples from Texas Caucasians, African-Americans and Asians — and from Hispanics and Native Americans in particular — to round out their genetic record. The researchers also took samples from prison populations and infant blood screening in other states, including Florida, Minnesota and California. They did not pay Texas for the samples.

Eventually, research proposals indicate, federal officials hoped to be able to share this data worldwide, “for international law enforcement and investigation in the context of homeland security and anti-terrorism efforts.