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"There's a gap between the name and the DNA. ... There's no way one could just put one's hands on these blood spots and know anything about that person," says Dr. Christopher Loffredo of Georgetown University, who needed families' permission to cull about 1,200 blood spots stored in Maryland for a study that linked a pregnant woman's smoking or exposure to certain chemical solvents to fetal heart defects.
Still, Dr. Jennifer Puck of the University of California, San Francisco, who created the new SCID test using leftover blood spots, understands parents' concerns.
"DNA is your personal signature, and it uniquely identifies us," Puck says. "We all have to become more careful and more specific in terms of what we're going to do with the blood spots."
Bioethicist Aaron Goldenberg of Case Western Reserve University studied parent attitudes, and found three-quarters would be willing to have their baby's leftover blood spot used for research if they were asked first. But they generally oppose that research without consent.
The balancing act for states, he says, is separating the two issues -- lifesaving newborn screening and other use of the leftover blood -- in the little time available to educate parents.
Michigan has posted opt-out forms on a Web site and rolls them out in hospitals starting next month. The state points out safeguards, including that the blood spots can't be subpoenaed for law enforcement purposes.
Texas -- which soon will discard blood spots stored since 2002 rather than tracking down families for consent -- now seeks parental permission to store leftovers. It has requests to destroy about 13,772 children's blood spots out of about 400,000 births since last May, says health department spokeswoman Carrie Williams.
Jana Monaco of Woodbridge, Va., fears Texas' move could mean throwing out "information that might save a baby's life one day."
She has a 12-year-old son severely brain-damaged from a metabolic disorder that wasn't part of screening when he was born -- and a 7-year-old daughter diagnosed early who stays healthy with a special diet.
"People put more information obtainable about their own personal lives out on Facebook and MySpace than from their little blood spots," she says. She urges better public information "to really calm this issue."
Lauran Neergaard covers health and medical issues for The Associated Press in Washington.
Copyright 2010 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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