Evidence map›Paper›PMID 29363051›Full record

ArticleJournal of community genetics2018

Desiderata for digital consent in genomic research.

Carlos Luis Parra-Calderón, Jane Kaye, Alberto Moreno-Conde, Harriet Teare, Francisco Nuñez-Benjumea

Abstract read
In one paragraph

Article in Journal of community genetics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing 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

6 citing papers in PubMed.

  1. Review
  2. Article
  3. Article
  4. Review
  5. Replacing Paper Informed Consent with Electronic Informed Consent for Research in Academic Medical Centers: A Scoping Review.AMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science · 2020
    Article
  6. 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

5 authors.

Carlos Luis Parra-CalderónGroup of Research and Innovation in Biomedical Informatics, Biomedical Engineering and Health Economy, Institute of Biomedicine of Seville, IBiS / Virgen del Rocío University Hospital / CSIC / University of Seville, 41013, Seville, Spain. clparrac@gmail.com.ORCID http://orcid.org/0000-0003-2609-575X
Jane KayeHeLEX Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK.
Alberto Moreno-CondeGroup of Research and Innovation in Biomedical Informatics, Biomedical Engineering and Health Economy, Institute of Biomedicine of Seville, IBiS / Virgen del Rocío University Hospital / CSIC / University of Seville, 41013, Seville, Spain.
Harriet TeareHeLEX Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK.
Francisco Nuñez-BenjumeaGroup of Research and Innovation in Biomedical Informatics, Biomedical Engineering and Health Economy, Institute of Biomedicine of Seville, IBiS / Virgen del Rocío University Hospital / CSIC / University of Seville, 41013, Seville, Spain.

Funding

European Cooperation in Science and Technology IS1303
6 · The paper itself

Abstract

Herein, we describe the characterization of a Digital Consent (DC) System to support current ethical-legal issues associated with challenges posed by informed consent for genomic research. A potential solution to support ongoing interaction with patients and allow control over how their data and samples are being used in genomic research can be Digital Consent based. But there are other challenges that need to be addressed, such as incidental findings when analyzing the results of genomic tests (not expected). This paper addresses security and privacy recommendations for the development of precision medicine, and the interoperability references of Health Information Standardization Organizations such as HL7 and IHE, as well as recent research in the field of ethics in Genomic Medicine. As a result of this work, ten key features that need to be further explored have been identified in order to support the realization of DC in Genomic Research.

Identifiers

PMID29363051
PMCPMC5849705

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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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.