Evidence map›Paper›PMID 26004130›Full record

ArticleJournal of community genetics2016

Timing and context: important considerations in the return of genetic results to research participants.

Kate A McBride, Nina Hallowell, Martin H N Tattersall, Judy Kirk, Mandy L Ballinger, David M Thomas, Gillian Mitchell, Mary-Anne Young

Abstract read
In one paragraph

Article in Journal of community genetics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing 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

8 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. Research participant interest in primary, secondary, and incidental genomic findings.Genetics in medicine : official journal of the American College of Medical Genetics · 2016
    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

8 authors.

Kate A McBrideSchool of Public Health, Sydney Medical School, Camperdown, NSW, 2006, Australia. kate.mcbride@sydney.edu.au.
Nina HallowellCentre for Health and Society, University of Melbourne, Parkville, VIC, 3052, Australia.
Martin H N TattersallDepartment of Cancer Medicine, Sydney Medical School, Royal Prince Alfred Hospital, Camperdown, NSW, 2006, Australia.
Judy KirkThe Familial Cancer Service, Crown Princess Mary Cancer Centre, Westmead, NSW, 2145, Australia.
Mandy L BallingerResearch Division, Peter MacCallum Cancer Centre, East Melbourne, VIC, 3002, Australia.
David M ThomasThe Kinghorn Cancer Centre, Garvan Institute of Medical Research, Darlinghurst, NSW, 2010, Australia.
Gillian MitchellSir Peter MacCallum Department of Oncology, University of Melbourne, Parkville, VIC, 3052, Australia.
Mary-Anne YoungFamilial Cancer Centre, Peter MacCallum Cancer Centre, East Melbourne, VIC, 3002, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

General consensus exists that clinically significant germline genetic research results should be fed back to research participants. A body of literature is emerging about Australian research participants' experiences of feedback of genetic research results and factors that influence a participant's actions after receiving such information. This exploratory qualitative study conducted interviews with 11 participants from the International Sarcoma Kindred Study, four probands and seven of their relatives. They had been informed by letter of the availability of clinically significant germline TP53 mutations identified through research. We examined the participants' views about the feedback of these genetic test results. Thematic (inductive) analysis was used to analyse the data. A number of factors influenced participants' responses following notification. This included participants' understanding of the notification letter and their perception of the relevance of the information for them and/or their family. Most notably, timing of the letter in the context of an individual's current life experiences was important. Timing and context are novel factors identified that may impact on research participants' understanding or their ability to access clinically significant research results. We outline strategies for disseminating results to research participants and their next of kin that may reduce their uncertainty around the receipt of research results.

Indexed as

FeedbackGeneticsLi-FraumeniResearch resultsResults disclosureSarcoma

Identifiers

PMID26004130
PMCPMC4715816

What OpenQuestion holds

Textmetadata
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.