Evidence map›Paper›PMID 29073807›Full record

ArticleJournal of empirical research on human research ethics : JERHRE2017

An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots.

Erin Rothwell, Aaron Goldenberg, Erin Johnson, Naomi Riches, Beth Tarini, Jeffrey R Botkin

Abstract readEvaluation Study
In one paragraph

Article in Journal of empirical research on human research ethics : JERHRE, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Trial
  2. Article
  3. Broad-scale informed consent: A survey of the CTSA landscape.Journal of clinical and translational science · 2019
    Article
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Erin Rothwell1 University of Utah, Salt Lake City, UT, USA.
Aaron Goldenberg2 Case Western Reserve University, Cleveland, OH, USA.
Erin Johnson1 University of Utah, Salt Lake City, UT, USA.
Naomi Riches1 University of Utah, Salt Lake City, UT, USA.
Beth Tarini3 The University of Iowa, Iowa City, IA, USA.
Jeffrey R Botkin1 University of Utah, Salt Lake City, UT, USA.

Funding

Utah Center of Excellence in ELSI Research: UCEERRM1HG009037 · NHGRI · UNIVERSITY OF UTAH · PI ROTHWELL, ERIN, TABERY, JAMES · 2016 to 2024
$8.0M
The Effect of Electronic Informed Consent Information (EICI) on Residual Newborn Specimen ResearchR01HD082148 · NICHD · UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH · PI Aaron J Goldenberg, ERIN ROTHWELL · 2015 to 2026
$5.1M
NHGRI NIH HHS RM1 HG009037NICHD NIH HHS R01 HD082148
6 · The paper itself

Abstract

As state newborn screening programs develop approaches to parental permission for the storage and use of residual dried newborn screening samples, it is important to understand how the public comprehends the consent elements. Focus groups in Utah, California, and Michigan ( n = 7 groups, 69 participants) were conducted to evaluate the language on a shortened consent form. Outcomes from the analysis included barriers to conceptualizing biospecimen research, the overly cautious tone and awkwardness of the consent form, and perceptions of community versus individual benefit. This research offers insight on public response to, and comprehension of, commonly used consent language for the storage and use of dried blood spot research in a shortened consent form.

Indexed as

Attitude to HealthBiological Specimen BanksComprehensionConsent FormsLanguageNeonatal ScreeningParental ConsentBloodCaliforniaFemaleFocus GroupsHumansInfant, NewbornMaleMichiganParentsbiorepositories/biobanksfocus groupsinformed consentnewborn screeningpublic health research

Identifiers

PMID29073807
PMCPMC5826543

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.