Evidence map›Paper›PMID 26929883›Full record

ArticleTranslational vision science & technology2016

Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research.

Emmanuelle Souzeau, Kathryn P Burdon, David A Mackey, Alex W Hewitt, Ravi Savarirayan, Margaret Otlowski, Jamie E Craig

Abstract read
In one paragraph

Article in Translational vision science & technology, 2016. 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. Article
  2. Article
  3. Article
  4. Article
  5. DissectingFrontiers in genetics · 2019
    Article
  6. Review
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

7 authors.

Emmanuelle SouzeauDepartment of Ophthalmology Flinders University, Flinders Medical Centre, Adelaide, Australia.
Kathryn P BurdonDepartment of Ophthalmology Flinders University, Flinders Medical Centre, Adelaide, Australia ; Menzies Institute of Medical Research, University of Tasmania, Hobart, Australia.
David A MackeyMenzies Institute of Medical Research, University of Tasmania, Hobart, Australia ; Centre for Ophthalmology and Visual Science, Lions Eye Institute, University of Western Australia, Perth, Australia.
Alex W HewittMenzies Institute of Medical Research, University of Tasmania, Hobart, Australia ; Centre for Eye Research Australia, University of Melbourne, Royal Victorian Eye and Ear Hospital, Melbourne, Australia.
Ravi SavarirayanVictorian Clinical Genetics Service, Murdoch Childrens Research Institute, University of Melbourne, Melbourne, Australia.
Margaret OtlowskiFaculty of Law, University of Tasmania, Hobart, Australia.
Jamie E CraigDepartment of Ophthalmology Flinders University, Flinders Medical Centre, Adelaide, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Whole genome and whole exome sequencing technologies are being increasingly used in research. However, they have the potential to identify incidental findings (IF), findings not related to the indication of the test, raising questions regarding researchers' responsibilities toward the return of this information to participants. In this study we discuss the ethical considerations related to the return of IF to research participants, emphasizing that the type of the study matters and describing the current practice standards. There are currently no legal obligations for researchers to return IF to participants, but some viewpoints consider that researchers might have an ethical one to return IF of clinical validity and clinical utility and that are actionable. The reality is that most IF are complex to interpret, especially since they were not the indication of the test. The clinical utility often depends on the participants' preferences, which can be challenging to conciliate and relies on participants' understanding. In summary, in the context of a lack of clear guidance, researchers need to have a clear plan for the disclosure or nondisclosure of IF from genomic research, balancing their research goals and resources with the participants' rights and their duty not to harm.

Indexed as

genetic researchincidental findingsreturn of results

Identifiers

PMID26929883
PMCPMC4757467

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.