title: Ethical issues in cystic fibrosis newborn screening: from data to public health policy.
abstract: Newborn screening for cystic fibrosis (CF) remains controversial largely because its implementation is less a scientific decision than a resolution of different and often conflicting normative values that underlie the policy issues framing the debate. This article summarizes the literature published between May 2001 and April 2002 (and relevant earlier literature) regarding the screening and treatment goals, clinical benefits and harms, and programmatic and ethical issues. Finally, we will present an analysis to argue for one set of ethical considerations that point to very specific policy recommendations that would justify CF newborn screening in certain circumstances and make its implementation more ethically appropriate.
authors.affiliation: Medical Genetics Branch, National Human Genome Research Institute, Department of Clinical Bioethics, Warren G Magnuson Clinical Center, National Institutes of Health, Bethesda, Maryland 20892-1156, USA. wilfond@nih.gov
authors.forename: Benjamin
authors.initials: B
authors.lastname: Wilfond
authors.forename: L S
authors.initials: LS
authors.lastname: Rothenberg
mesh_terms: D003550:Cystic Fibrosis / Q000453:epidemiology*; D005260:Female; D006291:Health Policy; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D015997:Neonatal Screening / Q000941:ethics*; D011050:Policy Making; D011634:Public Health / Q000941:ethics*; D012307:Risk Factors; D014481:United States