Most babies in the U.S. undergo a screening for genetic diseases soon after they're born. It's a quick test, done with a simple heel prick, and it screens for 40 different ailments, many of which can be eliminated with early detection. The testing is widely considered one of science's great achievements and saves thousands of lives each year -- much like vaccines -- so of course someone out there has a problem with it.
According to Buzzfeed, a new bill in California aims to change the way the state collects newborn blood and turn genetic testing into a privacy issue. Currently, blood for genetic testing is collected on a card. Once the testing is complete, the card is placed in storage. Down the road it could be used as an anonymous blood sample in scientific research that studies the effects of certain toxins on newborns, or even to develop more comprehensive genetic testing.
20 states participate in collecting and distributing samples for scientific use, and the practice is detailed in pamphlets and paperwork parents receive prior to testing. Mike Gatto, author of the California bill, believes most people don't read this paperwork and end up leaving their children vulnerable to abuses of privacy by the government.
“I talked to, like, 50 parents,” Mike Gatto, the California assemblyman introducing the Newborn Blood Sample Privacy bill, told BuzzFeed News. None of them, he said, knew that California had banked their baby’s DNA and handed it over to scientific research. “I don’t mean to sound alarmist,” he added, “but this really does become a situation with a state-created DNA bank, with profound room for abuse.”
Gatto, who apparently believes real life is exactly like a dystopian science fiction novel, thinks people are unknowingly contributing to some sort of DNA database that could possibly be used for sinister purposes, so he drafted a bill that allowed parents to opt out of genetic testing entirely. Never mind the 3,400 infants whose lives are saved by genetic testing each year, or the fact that this testing process has been going on for 55 years with zero security breaches, or even the fact that information about how these samples are used is readily available.
After much-deserved backlash from the medical community he altered the bill so it no longer gave parents the option to opt out completely, though they still could. There are a few parents who opt out of testing for a variety of reasons. Instead, the new version of the bill calls for a form with a box parents can check stating they don't want to participate in scientific research and want their child's blood sample destroyed after testing.
As Buzzfeed reports, these changes aren't likely to cause more parents to opt out of genetic testing entirely, but they are likely to cause more parents to opt out of the research portion due to needless privacy concerns, which means the scientific community loses a valuable and diverse sample of data. Both Texas and Michigan have faced lawsuits over storing newborn blood samples, and in both cases the parents won and the states were forced to destroy millions of stored samples because a few people had an issue.
The government shouldn't be able to collect DNA samples without consent and parents definitely need to be aware of what's going on, but the approach Gatto is taking with this bill seems alarmist. Raising awareness is one thing. Scaring people by acting like the government is building some super secret database to use against us is another.
The destruction of these samples would be a huge loss to the scientific community and hamper research that ultimately benefits all of us. If this bill passes, it should not only raise awareness of the process, but also of the benefits. Using an anonymous blood sample to make scientific discoveries that could save thousands more babies and improve their quality of life is not something to fear.