Evidence map›Paper›PMID 29464398›Full record

ArticleFamilial cancer2018

Discussions about predictive genetic testing for Lynch syndrome: the role of health professionals and families in decisions to decline.

Anaita Kanga-Parabia, Clara Gaff, Louisa Flander, Mark Jenkins, Louise A Keogh

Abstract read
In one paragraph

Article in Familial cancer, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.

0numbers the graph read from it
0cells of the map it votes in
10citing 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

10 citing papers in PubMed.

  1. Article
  2. Article
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  5. Article
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  8. Article
  9. Review
  10. A novelHuman genome variation · 2018
    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.

Anaita Kanga-ParabiaCentre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, 207 Bouverie St, Carlton, Melbourne, VIC, 3010, Australia.
Clara GaffDepartments of Paediatrics and Medicine, The University of Melbourne, Melbourne, Australia.
Louisa FlanderCentre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Australia.
Mark JenkinsCentre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Australia.
Louise A KeoghCentre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, 207 Bouverie St, Carlton, Melbourne, VIC, 3010, Australia. l.keogh@unimelb.edu.au.

Funding

Data sharing: the Colon Cancer Family Registry CohortU01CA167551 · NCI · UNIVERSITY OF MELBOURNE · PI Daniel David BUCHANAN, Steven Gallinger · 2018 to 2026
$16.8M
Colon Cancer Family Registry CohortUM1CA167551 · NCI · STANFORD UNIVERSITY · PI HAILE, ROBERT WILLIAM, JENKINS, MARK A · 2013 to 2017
$11.3M
AUSTRALASIAN COLORECTAL CANCER FAMILY REGISTRYU01CA097735 · NCI · UNIVERSITY OF MELBOURNE · PI HOPPER, JOHN L · 2002 to 2007
$6.9M
The Colon Cancer Family Registry: AustralasiaU24CA097735 · NCI · UNIVERSITY OF MELBOURNE · PI HOPPER, JOHN L · 2008 to 2011
$6.2M
Redox Regulation of Metastasis by Sod2K22CA095011 · NCI · ALBANY MEDICAL COLLEGE · PI MELENDEZ, JUAN ANDRES · 2002 to 2004
$446k
NCI NIH HHS RFA #CA-95-011NCI NIH HHS U01 CA097735NCI NIH HHS U01 CA167551NCI NIH HHS U24 CA097735NCI NIH HHS UM1 CA167551
6 · The paper itself

Abstract

Unaffected relatives of individuals with Lynch syndrome can be offered predictive genetic testing to guide surveillance recommendations. The decision-making process of those who decline testing, particularly those who do not attend a clinical genetics service, is poorly understood. We have addressed this gap by interviewing 33 individuals from Lynch syndrome mutation-carrying families, unaffected by cancer, who declined predictive genetic testing. Here, we analyse the data provided by 20 participants who unequivocally declined testing. Those who indicated they did not have enough information to make a decision or intended to undergo testing in the future were excluded. Analysis revealed that few decliners discussed their decision with general practitioners or genetic counsellors. Family members were commonly involved to varying degrees, with participants either (1) making group decisions with family members, (2) feeling persuaded by family members to either accept or decline testing, (3) discussing the test but making their own decision. A minority did not discuss testing with family members while making their decision. This research reveals the health communication activities of an understudied group, those declining predictive testing, and indicates that for many, health professionals play a minor role in the decision compared to family.

Indexed as

Genetic TestingAgedColorectal Neoplasms, Hereditary NonpolyposisDecision MakingFamilyFemaleGenetic CounselingHumansMaleMiddle AgedPhysiciansTreatment RefusalCommunicationDecision makingDeclinersLynch syndromePredictive genetic testingQualitative methods

Identifiers

PMID29464398
PMCPMC6102092

What OpenQuestion holds

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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.