Parental permission for pilot newborn screening research: guidelines from the NBSTRN

There is broad recognition of the need for population-based research to assess the safety and efficacy of newborn screening (NBS) for conditions that are not on current panels. However, prospective population-based research poses significant ethical, regulatory, and logistical challenges. In the con...

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Veröffentlicht in:	Pediatrics (Evanston) 2014-02, Vol.133 (2), p.e410-e417
Hauptverfasser:	Botkin, Jeffrey R, Lewis, Michelle Huckaby, Watson, Michael S, Swoboda, Kathryn J, Anderson, Rebecca, Berry, Susan A, Bonhomme, Natasha, Brosco, Jeffrey P, Comeau, Anne M, Goldenberg, Aaron, Goldman, Edward, Therrell, Bradford, Levy-Fisch, Jill, Tarini, Beth, Wilfond, Benjamin
Format:	Artikel
Sprache:	eng
Schlagworte:	Bioethics Biomedical Research - ethics Biomedical Research - standards Children & youth Decision making Evaluation Health aspects Health screening Humans Infant, Newborn Infants (Newborn) Medical screening Neonatal Screening - ethics Neonatal Screening - standards Newborn infants Parents Parents & parenting Pediatrics Pilot Projects Practice guidelines (Medicine) Safety and security measures Special Third-Party Consent - ethics
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