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.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Intramural Research (Z01)
Project #
1Z01HG000143-03
Application #
6681594
Study Section
Molecular Genetics B Study Section (MGB)
Project Start
Project End
Budget Start
Budget End
Support Year
3
Fiscal Year
2002
Total Cost
Indirect Cost
Name
Human Genome Research
Department
Type
DUNS #
City
State
Country
United States
Zip Code
Gollust, Sarah E; Wilfond, Benjamin S; Hull, Sara Chandros (2003) Direct-to-consumer sales of genetic services on the Internet. Genet Med 5:332-7
Wilfond, Benjamin; Rothenberg, L S (2002) Ethical issues in cystic fibrosis newborn screening: from data to public health policy. Curr Opin Pulm Med 8:529-34
Gollust, Sarah E; Hull, Sara Chandros; Wilfond, Benjamin S (2002) Limitations of direct-to-consumer advertising for clinical genetic testing. JAMA 288:1762-7