Evidence map›Paper›PMID 24963353›Full record

ArticleGenome medicine2014

Returning individual research results for genome sequences of pancreatic cancer.

Amber L Johns, David K Miller, Skye H Simpson, Anthony J Gill, Karin S Kassahn, Jeremy L Humphris, Jaswinder S Samra, Katherine Tucker, Lesley Andrews, David K Chang and 6 more

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Genome medicine, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed
1.9field-weighted citation impact, top 13% of its field
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

11 citing papers in PubMed, 22 citations in OpenAlex.

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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

16 authors at 7 institutions in 2 countries.

Amber L JohnsCancer Research Program, Garvan Institute of Medical Research, the Kinghorn Cancer Centre, Sydney, NSW, 2010, Australia.
David K MillerQueensland Centre for Medical Genomics, Institute for Molecular Biosciences, University of Queensland, St Lucia, QLD, 4072, Australia.
Skye H SimpsonCancer Research Program, Garvan Institute of Medical Research, the Kinghorn Cancer Centre, Sydney, NSW, 2010, Australia.
Anthony J GillDepartment of Anatomical Pathology, Royal North Shore Hospital, Sydney Australia and University of Sydney, Sydney, NSW, 2065, Australia.
Karin S KassahnQueensland Centre for Medical Genomics, Institute for Molecular Biosciences, University of Queensland, St Lucia, QLD, 4072, Australia ; Genetic and Molecular Pathology, SA Pathology, Women's and Children's Hospital, North Adelaide, SA, 5006, Australia.
Jeremy L HumphrisCancer Research Program, Garvan Institute of Medical Research, the Kinghorn Cancer Centre, Sydney, NSW, 2010, Australia.
Jaswinder S SamraDepartment of Surgery, Royal North Shore Hospital, Sydney, NSW, 2065, Australia.
Katherine TuckerHereditary Cancer Clinic, Prince of Wales Hospital, Randwick, Sydney, NSW, 2031, Australia.
Lesley AndrewsHereditary Cancer Clinic, Prince of Wales Hospital, Randwick, Sydney, NSW, 2031, Australia.
David K ChangCancer Research Program, Garvan Institute of Medical Research, the Kinghorn Cancer Centre, Sydney, NSW, 2010, Australia ; Wolfson Wohl Cancer Research Centre, Institute of Cancer Sciences, University of Glasgow, Glasgow, Scotland, UK ; West of Scotland Pancreatic Unit, Glasgow Royal Infirmary, Glasgow, Scotland, UK.
Nicola WaddellQueensland Centre for Medical Genomics, Institute for Molecular Biosciences, University of Queensland, St Lucia, QLD, 4072, Australia.
Marina PajicCancer Research Program, Garvan Institute of Medical Research, the Kinghorn Cancer Centre, Sydney, NSW, 2010, Australia.
John V PearsonQueensland Centre for Medical Genomics, Institute for Molecular Biosciences, University of Queensland, St Lucia, QLD, 4072, Australia.
Sean M GrimmondQueensland Centre for Medical Genomics, Institute for Molecular Biosciences, University of Queensland, St Lucia, QLD, 4072, Australia.
Andrew V BiankinCancer Research Program, Garvan Institute of Medical Research, the Kinghorn Cancer Centre, Sydney, NSW, 2010, Australia ; Wolfson Wohl Cancer Research Centre, Institute of Cancer Sciences, University of Glasgow, Glasgow, Scotland, UK ; West of Scotland Pancreatic Unit, Glasgow Royal Infirmary, Glasgow, Scotland, UK ; Department of Surgery, Bankstown Hospital, Eldridge Road, Bankstown, Sydney, NSW 2200, Australia ; South Western Sydney Clinical School, Faculty of Medicine, University of New South Wales, Sydney, NSW, 2170, Australia ; Wolfson Wohl Cancer Research Centre, Institute of Cancer Sciences, University of Glasgow, Garscube Estate, Switchback Road, Bearsden, Glasgow, Scotland G61 1BD, UK ; Garvan Institute of Medical Research, 370 Victoria St, Darlinghurst, NSW, 2010, Australia.
Nikolajs ZepsSt John of God Subiaco, Perth, WA, 6008, Australia ; School of Surgery, The University of Western Australia, Perth, WA, 6009, Australia.
The University of Queensland · AUGarvan Institute of Medical Research · AUPrince of Wales Hospital · AURoyal North Shore Hospital · AUSt John of God Subiaco Hospital · AUThe University of Sydney · AUThe University of Western Australia · AU

Funding

Cancer Research UK 17263
6 · The paper itself

Abstract

backgroundDisclosure of individual results to participants in genomic research is a complex and contentious issue. There are many existing commentaries and opinion pieces on the topic, but little empirical data concerning actual cases describing how individual results have been returned. Thus, the real life risks and benefits of disclosing individual research results to participants are rarely if ever presented as part of this debate.

methodsThe Australian Pancreatic Cancer Genome Initiative (APGI) is an Australian contribution to the International Cancer Genome Consortium (ICGC), that involves prospective sequencing of tumor and normal genomes of study participants with pancreatic cancer in Australia. We present three examples that illustrate different facets of how research results may arise, and how they may be returned to individuals within an ethically defensible and clinically practical framework. This framework includes the necessary elements identified by others including consent, determination of the significance of results and which to return, delineation of the responsibility for communication and the clinical pathway for managing the consequences of returning results.

resultsOf 285 recruited patients, we returned results to a total of 25 with no adverse events to date. These included four that were classified as medically actionable, nine as clinically significant and eight that were returned at the request of the treating clinician. Case studies presented depict instances where research results impacted on cancer susceptibility, current treatment and diagnosis, and illustrate key practical challenges of developing an effective framework.

conclusionsWe suggest that return of individual results is both feasible and ethically defensible but only within the context of a robust framework that involves a close relationship between researchers and clinicians.

Identifiers

PMID24963353
PMCPMC4067993
OpenAlexW2099591395

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.