Evidence map›Paper›PMID 24801761›Full record

ArticleEuropean journal of human genetics : EJHG2015

Dynamic consent: a patient interface for twenty-first century research networks.

Jane Kaye, Edgar A Whitley, David Lund, Michael Morrison, Harriet Teare, Karen Melham

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in European journal of human genetics : EJHG, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 294 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
294citing papers in PubMed, 3 pooled it
–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

294 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Pooled it
  2. Organoids: a systematic review of ethical issues.Stem cell research & therapy · 2022
    Pooled it
  3. Pooled it
  4. Expanding the boundaries of previously obtained informed consent in research: Views from participants in the Personalised Risk-based Mammascreening study.Health expectations : an international journal of public participation in health care and health policy · 2023
    Trial
  5. Review
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  7. Article
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  9. Article
  10. 'A No-Brainer, but Not a Simple Decision': A Qualitative Study of Patient Experiences of Tissue Donation for Research in Rare Craniospinal Tumour Pathways.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  11. Review
  12. Patient experiences of tissue donation and digital consent support in primary craniospinal tumour research.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026
    Article
  13. Review
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  15. Article
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  17. Article
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  20. Article

234 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

6 authors.

Jane KayeCentre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford, Oxford, UK.
Edgar A WhitleyInformation Systems and Innovation Group, Department of Management, London School of Economics and Political Science, London, UK.
David LundHW Communications Ltd, Parkfield, Lancaster, UK.
Michael MorrisonCentre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford, Oxford, UK.
Harriet TeareCentre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford, Oxford, UK.
Karen MelhamCentre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford, Oxford, UK.

Funding

Wellcome Trust 096599Wellcome Trust 096599/2/11/Z
6 · The paper itself

Abstract

Biomedical research is being transformed through the application of information technologies that allow ever greater amounts of data to be shared on an unprecedented scale. However, the methods for involving participants have not kept pace with changes in research capability. In an era when information is shared digitally at the global level, mechanisms of informed consent remain static, paper-based and organised around national boundaries and legal frameworks. Dynamic consent (DC) is both a specific project and a wider concept that offers a new approach to consent; one designed to meet the needs of the twenty-first century research landscape. At the heart of DC is a personalised, digital communication interface that connects researchers and participants, placing participants at the heart of decision making. The interface facilitates two-way communication to stimulate a more engaged, informed and scientifically literate participant population where individuals can tailor and manage their own consent preferences. The technical architecture of DC includes components that can securely encrypt sensitive data and allow participant consent preferences to travel with their data and samples when they are shared with third parties. In addition to improving transparency and public trust, this system benefits researchers by streamlining recruitment and enabling more efficient participant recontact. DC has mainly been developed in biobanking contexts, but it also has potential application in other domains for a variety of purposes.

Indexed as

Databases as TopicProfessional-Patient RelationsComputer SecurityInformation DisseminationInformed Consent

Identifiers

PMID24801761
PMCPMC4130658

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.