Newborn screening practice, policy, and ethics: Parental perspectives on the issues

This presentation will summarize qualitative research designed to examine the policy- and practice-related perspectives of parents whose child has been diagnosed with a genetic disorder via newborn screening (NBS). The Robert Wood Johnson Foundation-funded project discussed here builds on pilot data presented at APHA in 2006. This session presents findings from a much larger study, and illuminates the 2007 theme of “politics, policy, and public health ethics” by refracting it through the lens of NBS -- a rapidly-growing, universally-mandated public health program with powerful policy significance.

Specific foci of the fifty qualitative interviews completed for this project included: how parents experience and think about key ethical issues in NBS, such as informed consent and mandatory diagnosis when treatment outcomes are uncertain; what parents say about NBS policy, and how they act within the existing system, with respect to both voluntary testing and policy advocacy; how parents experience the existing service system, and feel that system could improved. As background, the larger context of policy advocacy around NBS will also be presented.

The session's closing discussion will raise important questions about research's capacity to broaden policy-makers' access to diverse parental/consumer perspectives on NBS. Currently, emotional appeals of parents advocating NBS expansion have come to stand for a monolithic concept of “parental voice.” As states, federal agencies, and advisory groups continue to grapple with complex policy and ethical issues raised by NBS, access to the fullest possible range of experiences related to it becomes an increasingly critical concern for public health.