DEVELOPING PUBLIC POLICY FOR GENETIC DIAGNOSTIC SERVICES

Human Genome Research

Investigators

Linked publications, trials & patents

Abstract

This project is a conceptual analysis to describe the normative assumptions necessary to translate empirical health services data into public policy. An analysis of this process for the development of public policy for cystic fibrosis newborn screening in Wisconsin has been completed. This analysis included several key findings. First, any benefits found during the research phase can not be assumed if a routine program dramatically alters the screening approach. Second, these benefits must be considered within the context of other potentially forgone benefits to patents with CF. Third, the benefits must be considered within the context of other potentially forgone benefits to other children. Finally, these benefits must be considered in contrast to potential harms to false positive families. A similar analysis of the process for cystic fibrosis carrier testing is being completed. Subsequently, an analysis to describe normative conditions under which such policies would be complementary or contradictory will be conducted.