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Without Consent

Indiana says that over the past two decades it has been storing samples from newborns, potentially for use in medical research, without the consent of the children's parents, according to the Associated Press.

Between 1991 and June 2013, Indiana's Department of Health says, blood samples from around 2.3 million children were collected and stored without parental consent. Those samples have not been used in research programs yet, but what should happen to them now is up in the air.

Bob Bowman, director of the health department's Genomics and Newborn Screening Program, says the department is "struggling right now to try to figure out what is the best and most appropriate thing to do."

The practice was halted a year ago, when the state started asking parents if they would allow their baby's samples to be used in research. If they object, the samples are destroyed after six months.

Indiana law requires that the health agency develop a system for using the blood spots for epidemiological survey and research purposes, but in a de-identified format, the department says. The stored samples will not be released for use in research without permission, Bowman says, explaining that the samples may not even be useful for research because they have been kept in a warehouse with no temperature or humidity controls. He says he is not quite sure why the state is hanging on to the samples.

But Eric Meslin, director of the Indiana University School of Medicine's Center for Bioethics, says the dried blood spots could be valuable for research. Still, he argues that medical research requires "formal permission" and that collecting blood for a purpose like newborn screening ,but storing it for research purposes is not good policy.

"I think it's very legitimate for people to be concerned and wonder 'What happened?" he tells the AP.