"The destruction of those residual samples demonstrates the damage that can be done to the research enterprise if there is a public perception that states are using the samples for purposes other than that for which they were collected," Lewis says.
"I think some of the parents involved would have consented to the use of their baby's dried blood samples for research if they had been asked. These parents felt that their rights had been violated by not having been asked," Lewis added. "Even if the state did not intend to deceive the parents, there was a perception that the state was being deceptive, and this perception was damaging to the research enterprise."
The researchers agree that public discussion about the storage and use of newborn blood samples is vital, because people are becoming ever more aware that such specimens contain precise, identifying information about their children. People also realize that research is increasingly able to yield valuable information from biological specimens.
"Part of the issue is that some parents are concerned that the state or private companies could profit from the use of their children's blood sample," Lewis says.
Although no state addresses all of these issues in a comprehensive manner, Lewis pointed to South Carolina as one that had more robust policies in place with respect to the information that must be provided to parents. There, state law requires that parents be told that they can ask that their babies' blood samples not be used for research purposes.
"As states move forward in consideration of these issues," Lewis concluded, "it is vital that state policies regarding the retention and use of residual samples not undermine the public's trust in state newborn screening programsso that these programs can continue to protect the health of our
|Contact: Michael Pena|
Johns Hopkins Medical Institutions