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

Overview of attention for article published in Pediatrics, January 2014
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About this Attention Score

  • In the top 25% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (86th percentile)
  • Average Attention Score compared to outputs of the same age and source

Mentioned by

policy
1 policy source
twitter
10 tweeters

Citations

dimensions_citation
20 Dimensions

Readers on

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

J. R. Botkin, M. H. Lewis, M. S. Watson, K. J. Swoboda, R. Anderson, S. A. Berry, N. Bonhomme, J. P. Brosco, A. M. Comeau, A. Goldenberg, E. Goldman, B. Therrell, J. Levy-Fisch, B. Tarini, B. 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.

Twitter Demographics

The data shown below were collected from the profiles of 10 tweeters who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 47 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 44 94%

Demographic breakdown

Readers by professional status Count As %
Student > Master 9 19%
Researcher 8 17%
Student > Ph. D. Student 5 11%
Student > Doctoral Student 4 9%
Student > Bachelor 4 9%
Other 11 23%
Unknown 6 13%
Readers by discipline Count As %
Medicine and Dentistry 22 47%
Social Sciences 6 13%
Biochemistry, Genetics and Molecular Biology 3 6%
Agricultural and Biological Sciences 2 4%
Philosophy 2 4%
Other 5 11%
Unknown 7 15%

Attention Score in Context

This research output has an Altmetric Attention Score of 10. 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 10 July 2017.
All research outputs
#2,348,595
of 17,349,416 outputs
Outputs from Pediatrics
#5,850
of 14,381 outputs
Outputs of similar age
#37,008
of 273,777 outputs
Outputs of similar age from Pediatrics
#81
of 143 outputs
Altmetric has tracked 17,349,416 research outputs across all sources so far. Compared to these this one has done well and is in the 86th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 14,381 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 41.4. This one has gotten more attention than average, scoring higher than 59% of its peers.
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 273,777 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 86% of its contemporaries.
We're also able to compare this research output to 143 others from the same source and published within six weeks on either side of this one. This one is in the 43rd percentile – i.e., 43% of its contemporaries scored the same or lower than it.