Evidence map›Paper›PMID 31122281›Full record

ReviewGenome medicine2019

Points-to-consider on the return of results in epigenetic research.

Stephanie O M Dyke, Katie M Saulnier, Charles Dupras, Amy P Webster, Karen Maschke, Mark Rothstein, Reiner Siebert, Jörn Walter, Stephan Beck, Tomi Pastinen and 1 more

Abstract readReview
In one paragraph

Review in Genome medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
23citing 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

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

  1. Pooled it
  2. Pooled it
  3. Pooled it
  4. EpiATLAS - a reference for human epigenomic research.bioRxiv : the preprint server for biology · 2026
    Article
  5. Not whether but how: the ethics and Language of reporting back individual results.Environmental health : a global access science source · 2025
    Article
  6. Article
  7. Review
  8. Article
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  10. Review
  11. Article
  12. Article
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  16. Review
  17. Article
  18. The Exposome Approach in Allergies and Lung Diseases: Is It Time to Define a Preconception Exposome?International journal of environmental research and public health · 2021
    Review
  19. Review
  20. 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

11 authors.

Stephanie O M DykeCentre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, H3A 0G1, Canada. stephanie.dyke@mcgill.ca.
Katie M SaulnierCentre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, H3A 0G1, Canada.
Charles DuprasCentre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, H3A 0G1, Canada.
Amy P WebsterUCL Cancer Institute, University College London, London, WC1E 6DD, UK.
Karen MaschkeThe Hastings Center, Garrison, NY, 10524-4125, USA.
Mark RothsteinInstitute for Bioethics, Health Policy and Law, University of Louisville School of Medicine, Louisville, KY, 40202, USA.
Reiner SiebertInstitute of Human Genetics, Ulm University Medical Center, 89091, Ulm, Germany.
Jörn WalterSaarland University, 66123, Saarbrücken, Germany.
Stephan BeckUCL Cancer Institute, University College London, London, WC1E 6DD, UK.
Tomi PastinenDepartment of Human Genetics, McGill University and Genome Quebec Innovation Centre, Montreal, Quebec, H3A 0G1, Canada.
Yann JolyCentre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, H3A 0G1, Canada.

Funding

CIHR CEE-151618CIHR EP1–120608CIHR EP1–120609Department of Health BRC369/CN/SB/101310Department of Health NIHR-BTRU-2014-10074
6 · The paper itself

Abstract

As epigenetic studies become more common and lead to new insights into health and disease, the return of individual epigenetic results to research participants, in particular in large-scale epigenomic studies, will be of growing importance. Members of the International Human Epigenome Consortium (IHEC) Bioethics Workgroup considered the potential ethical, legal, and social issues (ELSI) involved in returning epigenetic research results and incidental findings in order to produce a set of 'Points-to-consider' (P-t-C) for the epigenetics research community. These P-t-C draw on existing guidance on the return of genetic research results, while also integrating the IHEC Bioethics Workgroup's ELSI research on and discussion of the issues associated with epigenetic data as well as the experience of a return of results pilot study by the Personal Genome Project UK (PGP-UK). Major challenges include how to determine the clinical validity and actionability of epigenetic results, and considerations related to environmental exposures and epigenetic marks, including circumstances warranting the sharing of results with family members and third parties. Interdisciplinary collaboration and good public communication regarding epigenetic risk will be important to advance the return of results framework for epigenetic science.

Indexed as

Epigenesis, GeneticPractice Guidelines as TopicBioethical IssuesEpigenomicsGenetic TestingHumansIncidental FindingsELSIEpigeneticsIncidental findingsReturn of results

Identifiers

PMID31122281
PMCPMC6533659

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.