title: Two faces of patient advocacy: the current controversy in newborn screening.
abstract: Newborn screening programmes began in the 1960s, have traditionally been conducted without parental permission and have grown dramatically in the last decade. Whether these programmes serve patients' best interests has recently become a point of controversy. Privacy advocates, concerned that newborn screening infringes upon individual liberties, are demanding fundamental changes to these programmes. These include parental permission and limiting the research on the blood samples obtained, an agenda at odds with the viewpoints of newborn screening advocates. This essay presents the history of newborn screening in the USA, with attention to factors that have contributed to concerns about these programmes. The essay suggests that the rapid increase in the number of disorders screened for and the addition of research without either public knowledge or informed consent were critical to the development of resistance to mandatory newborn screening and research. Future newborn screening initiatives should include public education and comment to ensure continued support.
authors.forename: Cosby G
authors.initials: CG
authors.lastname: Arnold
mesh_terms: D005820:Genetic Testing / Q000941:ethics* / Q000331:legislation & jurisprudence; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000191:economics / Q000941:ethics* / Q000331:legislation & jurisprudence; D033282:Parental Consent / Q000941:ethics* / Q000331:legislation & jurisprudence; D010344:Patient Advocacy / Q000941:ethics* / Q000331:legislation & jurisprudence; D010353:Patient Education as Topic; D010661:Phenylketonurias / Q000175:diagnosis; D018907:Privacy / Q000331:legislation & jurisprudence; D014481:United States
keywords: Confidentiality/Privacy; Genetic Screening/Testing; Public Health Ethics