Evidence map›Paper›PMID 33481187›Full record

ArticleJournal of community genetics2021

Electronic informed consent information for residual newborn specimen research: findings from focus groups with diverse populations.

Caren J Frost, Erin P Johnson, Brieanne Witte, Louisa Stark, Jeff Botkin, Erin Rothwell

Abstract read
In one paragraph

Article in Journal of community genetics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. 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.

Caren J FrostCollege of Social Work, University of Utah, 395 E 1500 S, room 229A, Salt Lake City, UT, 84112, USA. caren.frost@socwk.utah.edu.ORCID http://orcid.org/0000-0003-3934-3724
Erin P JohnsonDepartment of Obstetrics & Gynecology, University of Utah, Salt Lake City, UT, USA.
Brieanne WitteCommunity Collaboration and Engagement Team, University of Utah, Salt Lake City, UT, USA.
Louisa StarkGenetic Science Learning Center, University of Utah, Salt Lake City, UT, USA.
Jeff BotkinDepartment of Pediatrics, University of Utah, Salt Lake City, UT, USA.
Erin RothwellResearch Integrity & Compliance, University of Utah, Salt Lake City, UT, USA.

Funding

Utah Center for Clinical and Translational ScienceUL1TR002538 · NCATS · UNIVERSITY OF UTAH · PI HESS, RACHEL, MAJERSIK, JENNIFER JUHL · 2018 to 2022
$26.0M
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
NCATS NIH HHS UL1 TR002538NICHD NIH HHS R01 HD082148NIH HHS R01HD082148
6 · The paper itself

Abstract

We developed a video and an app for obtaining consent about allowing newborn blood spots (NBS) to be used as biospecimen resources for biobanking. Newborn screening programs test for treatable diseases and leave residual biospecimens that can be used in future research activities. We conducted focus groups and interviews with three diverse communities to determine (a) how well the consent tools worked and (b) participant familiarity with NBS. Participants preferred the video and noted that they were unaware that NBS could be used for future research. Providing information about how biospecimens could be used was a key issue.

Indexed as

BiobankingDiverse populationsElectronic informed consentResidual newborn specimens

Identifiers

PMID33481187
PMCPMC7846635

What OpenQuestion holds

Textmetadata
Read underepoch 390

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.