Your Child’s DNA Up For Grabs

dna_500Remember when your child was born and the nurse or midwife pricked his heal and squeezed blood samples onto a test card?  Maybe not.  A lot happens at the birth of a baby.

The “PKU” testing, which screens for genetic disorders, has been common practice for nearly a decade and is now “required” in all 50 states.

You probably never thought about it after the fact because the tests were negative and you were never notified of a problem.

But there might be a problem after all.

Nine families in Minnesota have sued the state’s health department for potentially giving away their babies’ DNA and violating their genetic privacy.

According to WorldNetDaily,

“Agency spokesman John Stine…confirmed the department takes the blood samples from about 70,000 infants annually, and unless the parents specifically choose to opt out of the program, their children’s DNA is saved.”

According to Stine, it’s up to nurses and lab technicians to notify parents of their right to opt out of the screening or require their samples to be destroyed upon completion of the test.

While the DNA is being “saved” by the state lab, independent researchers can request samples of the blood for other testing purposes.  Parents aren’t asked or notified if and when their child’s DNA is released to a third party.

Twila Brase, President of the Citizens’ Council on Health Care, said,

“None of these activities is authorized by law, and all of them violate the Minnesota genetic privacy law.”

Wondering  if my children’s’ DNA has potentially been shared without my knowledge or consent, I called the Wisconsin Newborn Screening Lab.

Lab Manager Gary Hoffman said he was aware of the lawsuit filed in Minnesota, but I was the first person in Wisconsin to bring up the issue.

Hoffman said there are “no significant differences” between Wisconsin and Minnesota as it relates to newborn screen testing and storage.

Wisconsin also has a law protecting genetic privacy, which the cataloging and experimenting of DNA samples without my permission, would appear (at least to me) to violate.

According to Hoffman, the DNA is saved for one year at the state lab and then destroyed.  In the meantime, researchers are allowed to request samples of baby’s DNA to be used as they see fit.  Samples are obtained anonymously at first, and if identification is desired by the researchers, parents must first consent.

While you may not care if your child’s DNA is being stored, what if it’s being used for research for which you’d be morally opposed?

After all, who owns your DNA?  And who do you want using your child’s DNA?

For more information on DNA privacy issues, check out Citizens’ Council on Health Care here.

To know your rights regarding newborn genetic screening, go here.  You can alter this form with appropriate statutes for your state.

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