Up to 2.5 million cards with infant blood are stored in hundreds of boxes in an undisclosed warehouse in Indiana. The issue? Parents are just finding out about them.
For 23 years, until 2013 when parental consent to keep blood samples was required in the state, the Indiana Department of Health took blood samples at birth to conduct immediate screenings for certain disorders and kept them without parent permission.
“It’s a surprise, a complete surprise to me. I had no idea about it,” one parent told WTHR-TV earlier this month when approached with the information.
“No, I was not aware,” another parent told the news station.
The state’s Genomics and Newborn Screening program is conducted by law to test for 47 conditions before the baby leaves the hospital or within one week for home births. The purpose is to catch diseases and conditions in order to recommend treatments as early as possible, if necessary.
“As of June 2013, parents/guardians of newborns indicate whether or not to allow their child’s [dried blood spot] to be made available for medical research purposes. If a parent/guardian chooses to have their child’s DBS saved, it will be stored and made available for medical research purposes for a period of three years and then destroyed,” the program’s website stated. “Although saved DBS, as of June 2013, will be available for medical research, no identifiable information about your baby will ever be released. If a parent/guardian indicates they do not want a baby’s DBS used for medical research, then the DBS is kept for 6 months to ensure additional screening is not necessary and then destroyed.
“If your baby was born before June 1, 2013, your baby’s DBS has not been made available for medical research,” the state reassured parents.
Even still though, Dr. Eric Meslin, director of the Indiana University School of Medicine’s Center for Bioethics, told WTHR that it wasn’t a good policy on the part of the state.
“I think it’s very legitimate for people to be concerned, to wonder what happened,” Meslin said. “I think it’s a natural human reaction. You’ve got something of mine and I didn’t know about it.”
“You need to ask permission,” he added
Watch WTHR-TV’s report about the revelation:
Indiana is not the only state collecting newborn blood samples and keeping them with or without permission from parents. In May, Minnesota passed a law that finally required parental consent to keep infant blood samples. Here’s more about what’s going on with this same practice around the country:
According to the Centers for Disease Control and Prevention, all babies in the U.S. are checked for certain medical conditions soon after birth using this method.
But an article in the journal for the American Academy of Pediatrics several years ago noted that many states do not have policies regarding retention of these blood samples: The review found that four states claim the samples as their own property; five states allow parents to request the samples be destroyed after testing; and six states require parental consent if the sample were to be used for other research. Only one state prohibits the newborn blood samples from being used for other research, while 18 states have not addressed the issue of retaining the samples at all.
At this point, Indiana is allowing parents who have had their children’s blood stored since 1991 without consent to fill out forms to either have it destroyed or explicitly saved for research. Even if it was saved though, WTHR pointed out, that improper storage over the years might render the sample unfit for research at this time.