Use of Residual Newborn Screening Bloodspots for Genetic Research: Public Health Ethics and Biobanking

Stored residual bloodspots collected for newborn screening may represent a rich source of readily available DNA samples for population based research. However, the use of these bloodspots for research purposes raise a number of ethical, legal, and social challenges to the current moral justification for mandatory newborn screening programs and the development of “public health biobanks”. The use of these samples also raise a number of issues regarding consent, access, privacy, and how programs might appropriately utilize a resource originally collected within the context of a public health service. Addressing these issues will require that our moral analyses attempt to address both individual/family rights and the social benefits generated through public health research. This paper will review the ethical issues surrounding the use of residual newborn screening bloodspots for genetic research. In particular, it will discuss data from a current qualitative interview study that assesses the attitudes of health department officials, genetic researchers, and parents in Michigan regarding the use of these samples. Along with a review of current newborn screening policies and educational materials across states, the analysis of these data will help appropriately address the ethical issues associated with the research uses of bloodspots in ways that protect the privacy and rights of families while utilizing a potentially valuable public health resource. In addition, these data will help to assess how the creation of “public health biobanks” may raise ethical questions distinct from more traditional DNA repositories, requiring ethical frameworks grounded in both medicine and public health.