Evidence map›Paper›PMID 33213438›Full record

ArticleBMC medical ethics2020

Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.

Miranda E Vidgen, Sid Kaladharan, Eva Malacova, Cameron Hurst, Nicola Waddell

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC medical ethics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 5 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
25citing papers in PubMed, 5 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

25 citing papers in PubMed, 5 syntheses or guidelines pooled it.

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  6. Genomic Data Governance Challenges Between Research and Clinical Care: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2026
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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

5 authors.

Miranda E VidgenQIMR Berghofer Medical Research Institute, 300 Herston Road, Herston, QLD, 4006, Australia. miranda.vidgen@qimrberghofer.edu.au.ORCID 0000-0003-4131-0390
Sid KaladharanQIMR Berghofer Medical Research Institute, 300 Herston Road, Herston, QLD, 4006, Australia.
Eva MalacovaQIMR Berghofer Medical Research Institute, 300 Herston Road, Herston, QLD, 4006, Australia.
Cameron HurstQIMR Berghofer Medical Research Institute, 300 Herston Road, Herston, QLD, 4006, Australia.
Nicola WaddellQIMR Berghofer Medical Research Institute, 300 Herston Road, Herston, QLD, 4006, Australia.

Funding

National Health and Medical Research Council APP1139071
6 · The paper itself

Abstract

backgroundThere has been considerable investment and strategic planning to introduce genomic testing into Australia's public health system. As more patients' genomic data is being held by the public health system, there will be increased requests from researchers to access this data. It is important that public policy reflects public expectations for how genomic data that is generated from clinical tests is used. To inform public policy and discussions around genomic data sharing, we sought public opinions on using genomic data contained in medical records for research purposes in the Australian state of Queensland.

methodsA total of 1494 participants completed an online questionnaire between February and May 2019. Participants were adults living in Australia. The questionnaire explored participant preferences for sharing genomic data or biological samples with researchers, and concerns about genomic data sharing.

resultsMost participants wanted to be given the choice to have their genomic data from medical records used in research. Their expectations on whether and how often they needed to be approached for permission on using their genomic data, depended on whether the data was identifiable or anonymous. Their willingness to sharing data for research purposes depended on the type of information being shared, what type of research would be undertaken and who would be doing the research. Participants were most concerned with genomics data sharing that could lead to discrimination (insurance and employment), data being used for marketing, data security, or commercial use.

conclusionsMost participants were willing to share their genomic data from medical records with researchers, as long as permission for use was sought. However, the existing policies related to this process in Queensland do not reflect participant expectations for how this is achieved, particularly with anonymous genomics data. This inconsistency may be addressed by process changes, such as inclusion of research in addition to clinical consent or general research data consent programs.

Indexed as

Data ManagementMotivationAdultAustraliaGenomicsHumansInformation DisseminationQueenslandSurveys and QuestionnairesData linkageData sharingGenomicHealth informationPublic viewsSecondary use

Identifiers

PMID33213438
PMCPMC7678081

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.