↓ Skip to main content

Parental Permission for Pilot Newborn Screening Research: Guidelines From the NBSTRN

Overview of attention for article published in Pediatrics, February 2014
Altmetric Badge

About this Attention Score

  • Good Attention Score compared to outputs of the same age (76th percentile)
  • Average Attention Score compared to outputs of the same age and source

Mentioned by

twitter
9 X users

Citations

dimensions_citation
21 Dimensions

Readers on

mendeley
48 Mendeley
Title
Parental Permission for Pilot Newborn Screening Research: Guidelines From the NBSTRN
Published in
Pediatrics, February 2014
DOI 10.1542/peds.2013-2271
Pubmed ID
Authors

Jeffrey R. Botkin, Michelle Huckaby Lewis, Michael S. Watson, Kathryn J. Swoboda, Rebecca Anderson, Susan A. Berry, Natasha Bonhomme, Jeffrey P. Brosco, Anne M. Comeau, Aaron Goldenberg, Edward Goldman, Bradford Therrell, Jill Levy-Fisch, Beth Tarini, Benjamin Wilfond

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.

X Demographics

X Demographics

The data shown below were collected from the profiles of 9 X users who shared this research output. Click here to find out more about how the information was compiled.
Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 48 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United States 2 4%
France 1 2%
Unknown 45 94%

Demographic breakdown

Readers by professional status Count As %
Student > Master 9 19%
Researcher 7 15%
Student > Ph. D. Student 6 13%
Professor > Associate Professor 4 8%
Student > Doctoral Student 4 8%
Other 10 21%
Unknown 8 17%
Readers by discipline Count As %
Medicine and Dentistry 21 44%
Social Sciences 6 13%
Biochemistry, Genetics and Molecular Biology 3 6%
Agricultural and Biological Sciences 2 4%
Philosophy 2 4%
Other 5 10%
Unknown 9 19%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 5. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 01 February 2014.
All research outputs
#6,547,185
of 24,397,600 outputs
Outputs from Pediatrics
#9,759
of 17,966 outputs
Outputs of similar age
#73,987
of 317,284 outputs
Outputs of similar age from Pediatrics
#133
of 248 outputs
Altmetric has tracked 24,397,600 research outputs across all sources so far. This one has received more attention than most of these and is in the 72nd percentile.
So far Altmetric has tracked 17,966 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 47.5. This one is in the 45th percentile – i.e., 45% of its peers scored the same or lower than it.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 317,284 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 76% of its contemporaries.
We're also able to compare this research output to 248 others from the same source and published within six weeks on either side of this one. This one is in the 46th percentile – i.e., 46% of its contemporaries scored the same or lower than it.