Retention and use, without explicit parental permission, of residual dried blood samples from newborn screening has generated public controversy over concerns about violations of family privacy rights and loss of parental autonomy. The public debate about this issue has included little discussion about the destruction of a potentially valuable public resource that can be used for research that may yield improvements in public health. The research community must advocate for policies and infrastructure that promote retention of residual dried blood samples and their use in biomedical research.
Millions of residual dried blood samples (DBSs) left over from newborn screening have been destroyed because of controversy surrounding their retention and secondary use in biomedical research without explicit parental permission. Last year, the Texas Department of State Health Services destroyed 5.3 million DBSs (1), and more recently, the Minnesota Department of Health announced plans to begin destroying DBSs as soon as screening of a newborn has been completed (2). Earlier this year, the Irish Minister of Health announced plans to destroy 1.5 million archived DBSs (3). The controversy over DBSs has generated public debate about the privacy rights of newborns and the autonomy rights of parents to decide whether or not their child’s DBS should be retained and used in future research.
Largely absent from the debate, however, is discussion of these DBSs as a valuable public resource that could be used in biomedical research for the improvement of public health or of the detrimental effect that the destruction of these diverse sample sets may have on the advancement of biomedical science. If the DBSs are to be preserved as a resource for biomedical research, it is incumbent on scientists to offer evidence of potential public health benefits that may be garnered from the use of these samples and to advocate on behalf of policies that support their ethical use in research.