State laws and policies governing the storage and use of surplus blood samples taken from newborns as part of the routine health screening process range from explicit to non-existent, leaving many parents ill-informed about how their babies' left over blood might be used, according to a team led by a member of the Johns Hopkins Berman Institute of Bioethics, in collaboration with researchers from the University of Utah. A report on their analysis of the subject is published March 28 in the journal Pediatrics.
The study is believed to be one of the first to provide in-depth analysis of the nation's fragmented newborn screening blood use policies. The authors say that their findings underscore the need for a comprehensive and transparent approach. At a minimum, all states should require that parents be fully informed about how babies' blood samples left over after the screening procedure will be stored and how they might be used, according to Michelle H. Lewis, M.D., J.D., a research scholar at the Berman Institute's Genetics and Public Policy Center.
The residual samples, typically dried blood spots, have been the center of public debate in recent years. In 2009, families in Minnesota and Texas sued their respective state health departments for storing surplus newborn blood samples without their knowledge or consent. News stories about the outrage expressed by parentswho claimed the practice violated their right to genetic privacy and full disclosurespawned headlines such as CNN's: "The government has your baby's DNA."
"States have developed a wide range of policies regarding the retention and use of residual dried blood samples," says Lewis, "ranging from prohibiting their use for research under any circumstances, to allowing research with anonymous samples without parental consent, to requiring parental consent for any research using the samples."
Newborns in all 50 states, plus the District of Columbia, are routinel
|Contact: Michael Pena|
Johns Hopkins Medical Institutions