State agrees to destroy controversial infant blood samples

State agrees to destroy controversial infant blood samples
2009 12 27

By Martin Bartlett | KVUE.com

The Texas Department of State Health services has about four months to destroy blood samples taken and stored without permission from millions of babies.

State law allows the department to collect those blood samples for routine disease testing, but the state's been hanging on to millions of blood samples since the testing began in 2002.

Dad Michael Neff says blood samples taken from his two daughters should have been destroyed.
He fears the state might have used those blood samples in research projects or sold them to insurance companies.

“I don't think my kid's DNA should be out there, and if it is it should be mine and their mother's decision,” Neff said.

The Department of State Health Services now agrees with Neff’s position.

They've settled a lawsuit filed by the Texas Civil Rights Project over the samples which the state was keeping without getting permission from parents.

"When they do this secretly it raises the specter that their motives aren't pure,” said Texas Civil Rights Project attorney Jim Harrington

As a result of the lawsuit, he explained, samples taken before May 27, 2009, will be destroyed by mid-March 2010.

The state has also agreed to post online a list of any research projects in which those blood samples were used.

The state will also post information about the program on its website in English, Spanish and Vietnamese.

A state law which went into effect over the summer allows parents of children born since may of this year to tell the state not to keep the data on their children.

The state says it will continue to collect the date for routine testing and destroy them once those tests are done.

"We have no problem with that, there is a legitimate state interest in that it can be beneficial -- there is no doubt about that,” Harrington said.

The Department of State Health Services declined KVUE’s request for an on-camera interview.

They e-mailed a statement to us this afternoon saying that they'd comply with settlement and destroy those samples.

“DSHS believes settling this lawsuit is in the best interest of this program’s core mission to screen all newborn babies in Texas for life-threatening disorders. Newborn screening saves children’s lives, and settling this lawsuit allows us to continue operating this critical program,” the statement said.

“DSHS is complying with all the requirements of that legislation, including the provision allowing parents to have blood spots from their infants destroyed rather than stored.”

Article from:
As a result of the lawsuit, he explained, samples taken before May 27, 2009, will be destroyed by mid-March 2010.

The state has also agreed to post online a list of any research projects in which those blood samples were used.

The state will also post information about the program on its website in English, Spanish and Vietnamese.

A state law which went into effect over the summer allows parents of children born since may of this year to tell the state not to keep the data on their children.

The state says it will continue to collect the date for routine testing and destroy them once those tests are done.

"We have no problem with that, there is a legitimate state interest in that it can be beneficial -- there is no doubt about that,” Harrington said.

The Department of State Health Services declined KVUE’s request for an on-camera interview.

They e-mailed a statement to us this afternoon saying that they'd comply with settlement and destroy those samples.

“DSHS believes settling this lawsuit is in the best interest of this program’s core mission to screen all newborn babies in Texas for life-threatening disorders. Newborn screening saves children’s lives, and settling this lawsuit allows us to continue operating this critical program,” the statement said.

“DSHS is complying with all the requirements of that legislation, including the provision allowing parents to have blood spots from their infants destroyed rather than stored.”

Article from: KVUE.com

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