Abstract:
: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 context of NBS, there have been a variety of approaches that address parental decision-making in pilot studies of new screening tests or conditions. This article presents an ethical and legal analysis of the role of parental permission by the Bioethics and Legal Work Group of the Newborn Screening Translational Research Network created under a contract from the National Institute of Child Health and Human Development to the American College of Medical Genetics and Genomics. Circumstances are outlined in which a waiver of documentation of permission or a waiver of permission may be ethically and legally appropriate in the NBS context. These guidelines do not constitute American Academy of Pediatrics policy.
journal_name
Pediatricsjournal_title
Pediatricsauthors
Botkin JR,Lewis MH,Watson MS,Swoboda KJ,Anderson R,Berry SA,Bonhomme N,Brosco JP,Comeau AM,Goldenberg A,Goldman E,Therrell B,Levy-Fisch J,Tarini B,Wilfond B,Bioethics and Legal Work Group of the Newborn Screening Translatiodoi
10.1542/peds.2013-2271subject
Has Abstractpub_date
2014-02-01 00:00:00pages
e410-7issue
2eissn
0031-4005issn
1098-4275pii
peds.2013-2271journal_volume
133pub_type
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