Government storing baby blood data raises privacy concerns

Government storing baby blood data raises privacy concerns (Image 1)

APEX, N.C. (WNCN) – The Nafkes of Apex have two healthy daughters, and their girls are among the millions of children already screened.

Both of their results came back perfectly normal.

But it’s what the government is doing with your child’s DNA after the children are screened for diseases that is raising ethical concerns.

“I thought they were using it to check to see if she had any newborn illnesses that can be detected through this blood test,” said Melissa Nafke, a mother of two in Apex.

Government officials are doing just that – but that’s just the beginning.

“It was sold as we are going to screen for diseases, and that’s it,” said their father, Adam Nafke. “I have no idea about the big government database where all of this goes.”

The Nafkes had no idea that DNA left over from their daughter’s newborn screening tests, called dried blood spots, are stored in a government facility for up to five years in North Carolina.

“The fact that they take these without consent really bugs me, that it’s opt out,” said Adam Nafke.

But his wife, Melissa, said, “As long as they’re used for good reasons I’m not concerned.”

Clearly the Nafkes disagrees on this issue.

But these concerns are why DHHS officials want to set the record straight.

Asked what the government plans to do with the data, Scott Zimmerman, director of the N.C. State Public Health Lab, said,

“So if an outside agency such as an academic institution approaches us and asks for dried blood spots, there are two approaches that can be taken. One, we can get parental consent to release that dried blood sample to an outside entity. We will not release any DBS that contains patient information without parental consent.”

Zimmerman added, “The only other way DBS are released is if they are de-identified.”

Over the years, DHHS has released these dried blood spots to the University of North Carolina, for example. And the argument both institutions are making is that these spots are necessary for research.

Dr. Margaret Gulley, a pathologist at UNC, said being able to use the dried blood spots “is a huge advantage” in clinical research.

Gulley hopes parents will not worry about the security of their child’s DNA.

“We do take very seriously the opportunity to keep the information secure, especially when it has to do with health information,” Gulley said.

And Zimmerman insisted “no dried blood spots are released without parental consent.”

In one building, millions of dried blood spots are stored. And although the state right now is only using these dried blood spots for clinical advancements, some parents are worried that could all change in the future.

Adam Nafke said it concerns him that such a vast database could one day be used for “nefarious purposes that violate our rights.”

But Melissa Nafke said, “If they want to 20 years down the road follow and track those children and find out what their outcomes were, I think that’s potential for a lot of research and a lot of amazing discovery.”

“Any large government database that holds personal information concerns me – especially with everything that’s happening with the [National Security Agency],” Adam Nafke said.

So regardless of your position, the government still owns your child’s DNA. How they plan on using it – especially if it changes and evolves outside the realm of research in the future – remains to be seen.

But state officials say North Carolina has never sold this information to outside agencies for profit. Right now they are de-identified and released for research purposes, without needing your consent.

Here is the dried blood spot policy from the N.C. State Laboratory Public Health: 

1  NCSLPH will release samples upon written request by the parents and guardians to an authorized health care provider; NCSLPH will release dried blood spot samples with individually identifiable information to external agencies for research purposes only if parental consent is obtained” OR,

2. NCSLPH will release de-identified dried blood spot samples to external agencies for research projects provided that the research project has approval by the agency’s Institutional Review Board (IRB) and the Division of Public Health IRB.

Dried blood spots released in 2013-14:

  • University of Buffalo: 1 for 2014
  • UNC School of Public Health: 18 for 2013, 5 for 2014
  • UNC Hospital Molecular Genetics Laboratory: 48 for 2013, 35 for 2014

Copyright 2014 WNCN. All rights reserved.

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