Evidence map›Paper›PMID 36520344›Full record

ArticleNeuroinformatics2023

Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem.

Stephanie O M Dyke, Kathleen Connor, Victoria Nembaware, Nchangwi S Munung, Kathy Reinold, Giselle Kerry, Mamana Mbiyavanga, Lyndon Zass, Mauricio Moldes, Samir Das and 6 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Neuroinformatics, 2023. 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. Review
  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

16 authors.

Stephanie O M DykeMcGill Centre for Integrative Neuroscience, Department of Neurology & Neurosurgery, Faculty of Medicine and Health Sciences, Montreal Neurological Institute, McGill University, Montreal, QC, Canada. dykesom@gmail.com.
Kathleen ConnorHealth Level 7 (HL7) & Veterans Health Administration, Washington, D.C, USA.
Victoria NembawareComputational Biology Division, IDM, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Nchangwi S MunungDivision of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Kathy ReinoldBroad Institute of MIT and Harvard, Cambridge, MA, USA.
Giselle KerryEuropean Molecular Biology Laboratory, European Bioinformatics Institute, Hinxton, UK.
Mamana MbiyavangaComputational Biology Division, IDM, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Lyndon ZassComputational Biology Division, IDM, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Mauricio MoldesCentre for Genomic Regulation, Barcelona, Spain.
Samir DasMcGill Centre for Integrative Neuroscience, Department of Neurology & Neurosurgery, Faculty of Medicine and Health Sciences, Montreal Neurological Institute, McGill University, Montreal, QC, Canada.
John M DavisHealth Level 7 (HL7) & Veterans Health Administration, Washington, D.C, USA.
Jordi Rambla De ArgilaCentre for Genomic Regulation, Barcelona, Spain.
J Dylan SpaldingEuropean Molecular Biology Laboratory, European Bioinformatics Institute, Hinxton, UK.
Alan C EvansMcGill Centre for Integrative Neuroscience, Department of Neurology & Neurosurgery, Faculty of Medicine and Health Sciences, Montreal Neurological Institute, McGill University, Montreal, QC, Canada.
Nicola MulderComputational Biology Division, IDM, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Jason KaramchandaniDepartment of Pathology, Faculty of Medicine and Health Sciences, McGill University Health Centre & Montreal Neurological Institute, McGill University, Montreal, QC, Canada.

Funding

H3ABioNet: informatics solutions for H3AfricaU24HG006941 · NHGRI · UNIVERSITY OF CAPE TOWN · PI MULDER, NICOLA · 2017 to 2021
$12.9M
Sickle Africa Data Coordinating CenterU24HL135600 · NHLBI · UNIVERSITY OF CAPE TOWN · PI MULDER, NICOLA, WONKAM, AMBROISE · 2017 to 2025
$8.6M
NHGRI NIH HHS U24 HG006941NHLBI NIH HHS U24 HL135600Wellcome Trust
6 · The paper itself

Abstract

We previously proposed a structure for recording consent-based data use 'categories' and 'requirements' - Consent Codes - with a view to supporting maximum use and integration of genomic research datasets, and reducing uncertainty about permissible re-use of shared data. Here we discuss clarifications and subsequent updates to the Consent Codes (v4) based on new areas of application (e.g., the neurosciences, biobanking, H3Africa), policy developments (e.g., return of research results), and further practical considerations, including developments in automated approaches to consent management.

Indexed as

Biological Specimen BanksInformed ConsentEcosystemGenomicsConsentData accessData managementData sharingEthicsOpen science

Identifiers

PMID36520344
PMCPMC9931855

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.