title: Informing parents about newborn screening.
abstract: OBJECTIVE
  To evaluate current rules and regulations for educating parents about newborn screening.
  
  
  METHODS
  Cross-sectional survey.
  
  
  METHODS
  Newborn screening program coordinators in all 50 states and the District of Columbia.
  
  
  METHODS
  Answers to a standardized semi-structured telephone survey in January 2004.
  
  
  RESULTS
  Fifty programs provide standardized information about screening, and 32 of these have information available in multiple languages. Most programs (n=36) believe that parents should be informed about newborn screening as a part of prenatal care; however, none has rules or regulations requiring this. Five require documented informed consent; only one provides the consent form in a language other than English. Hospitals and birthing centers are required by many programs to educate families, including providing information (n=12), obtaining informed consent (n=5), informing parents of the right to refuse screening (n=13), and documenting refusal on institutionally developed forms (n=9). We found considerable variation in policy language across the newborn screening programs.
  
  
  CONCLUSIONS
  The complexity of current newborn screening programs and the likelihood of expansion in the number of conditions on newborn screening panels present a unique opportunity and challenge for public health nurses to ensure that these programs are effective and that care is integrated.
authors.affiliation: Child Health Evaluation and Research (CHEAR) Unit, Division of General Pediatrics, University of Michigan, Ann Arbor 48109-0456, USA. kempera@med.umich.edu
authors.forename: Alex R
authors.initials: AR
authors.lastname: Kemper
authors.forename: Kathryn E
authors.initials: KE
authors.lastname: Fant
authors.forename: Sarah J
authors.initials: SJ
authors.lastname: Clark
mesh_terms: D000328:Adult; D000704:Analysis of Variance; D001294:Attitude to Health; D002985:Clinical Protocols / Q000592:standards; D003430:Cross-Sectional Studies; D004282:Documentation / Q000592:standards; D019983:Guideline Adherence / Q000592:standards; D019538:Health Care Surveys; D006266:Health Education / Q000458:organization & administration*; D006291:Health Policy; D006301:Health Services Needs and Demand; D006801:Humans; D007231:Infant, Newborn; D007258:Informed Consent / Q000523:psychology / Q000592:standards; D015997:Neonatal Screening / Q000451:nursing; D024802:Nurse's Role; D015403:Nursing Evaluation Research; D010290:Parents / Q000193:education* / Q000523:psychology; D017410:Practice Guidelines as Topic; D015397:Program Evaluation; D011637:Public Health Nursing; D011795:Surveys and Questionnaires; D016312:Treatment Refusal; D014481:United States