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Health

Parents Question Access To Mandatory Baby Blood Test

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(Christopher Furlong/Getty Images)

(Christopher Furlong/Getty Images)

CBS SF Bay (con't)

Affordable Care Act Updates: CBSSanFrancisco.com/ACA

Health News & Information: CBSSanFrancisco.com/Health

SAN FRANCISCO (CBS) – Every baby born in the U.S. is supposed to have it – A blood test that screens for genetic diseases.

The test saves babies from serious brain damage and even death, but what happens “after” the blood sample is taken? You may be surprised, even shocked, to find out.

Soni and Mauro Pislor just learned abut it. Their son Diego was born just last month and they remember the needle prick in the baby’s left heel, that he got right after birth.

The hospital told them it was to test for genetic diseases. It turns out there’s more to it than that. After the blood spot is screened, it’s stored in a giant state database. Diego’s DNA, along with the DNA of every baby born in California, will be kept for at least a generation, and used for genetic research.

“I had no idea, really,” said Mauro Pislor.

“It would have been nice to know that they keep that,” said Soni Pislor.

“Right now there are about 15 million blood spots stored,” says Dr. Fred Lorey. He runs the state’s Newborn Screening Program and said the blood spots are used for a variety of things, all very beneficial.

He said state researchers use the spots to develop new tests that can screen for new diseases.

But the state also allows others to access the database. A CBS 5 review of state records show some requests come from parents, like Chris and Amber Harris.

They’ve been fighting to get Chris’ daughter Micaela back from South Africa where she was abducted, and needed her DNA to prove Chris was her father.

“I just thought ‘I wonder if they save those samples?,’” said Amber.

Sure enough, Micaela’s blood spot was in the state’s databank and proved Chris’ paternity.

“The fact that they had the samples is such a blessing,” said Chris Harris.

But there are other uses for the blood spots that are more controversial.  The state also gets requests from researchers.

“We get somewhere around 40-50 requests a year,” says Dr. Lorey.

He said there are strict guidelines concerning the types of research allowed.

“They have to be related to the public health of mother and child.” And to protect privacy, the spots don’t have a name on them, just a number.

“Only certain people in our program actually have access to that,” he said.

But that’s still not sitting well with Mauro Pislor.

“They have the DNA of my son and they can do whatever they want, and I don’t even know,” said Pislor.

Other families feel the same. There have been lawsuits in Minnesota and Texas, which had to destroy 5 million specimens last year.

“This is really is a DNA property rights issue,” said Twila Brase with the Citizens Council on healthcare in Minneapolis, who said DNA could be misused. “It could be used against the child eventually, later on in employment and insurance decisions…They are conducting research without the consent of the parent or the child.”

“We make every effort to inform them,” said Dr. Lorey, who said the information would not be distributed in such a way.

CBS 5 couldn’t find any reference to the database in the information booklet that parents get.

A test request form does say the spots will be used for research, “unless you specifically request in writing that your specimen not be used.” But it also said in small print that the state “may not be able to comply with your request.”

The Pislors said amid all the paperwork they had to sign, they never even saw that form.

“DNA is one thing, testing for diseases is another. We are not being told. Not good!” said Mauro Pislor.

Dr. Lorey said, since the DNA database was started way back in 1980, no parent has ever been denied a request to have their baby’s blood spot destroyed.

He said his department is in the process of reworking the information booklet to make sure parents are more informed. But there is still no proposal on the table to have parents actually sign a release form.

For more information on California’s Newborn Screening Program:

http://www.cdph.ca.gov/programs/nbs/Pages/default.aspx

For more information on the Minnesota lawsuit:

http://www.cchconline.org/issues/NewbornGeneticTestingMN.php

For more information on the Texas lawsuit:

www.texascivilrightsproject.org

For ethical discussion on the pros and cons of the blood spot databank:

http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=3826

(© 2010 CBS Broadcasting Inc. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed. Bay City News contributed to this report.)

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