Evidence map›Paper›PMID 38713191›Full record

ArticleThe oncologist2024

From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.

Megan C Best, Phyllis Butow, Jacqueline Savard, Ainsley J Newson, Rachel Campbell, Sabina Vatter, Christine E Napier, Nicci Bartley, Katherine Tucker, Mandy L Ballinger and 2 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in The oncologist, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

12 authors.

Megan C BestInstitute for Ethics and Society, The University of Notre Dame Australia, Broadway, NSW, Australia.ORCID 0000-0003-1570-8872
Phyllis ButowPsycho-Oncology Co-operative Research Group, School of Psychology, University of Sydney, Sydney, NSW, Australia.ORCID 0000-0003-3562-6954
Jacqueline SavardFaculty of Health, School of Medicine, Deakin University, Melbourne, VIC, Australia.ORCID 0000-0002-7965-6103
Ainsley J NewsonSydney Health Ethics, Faculty of Medicine and Health, Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.ORCID 0000-0002-3460-772X
Rachel CampbellFaculty of Science, School of Psychology, University of Sydney, Sydney, NSW, Australia.ORCID 0000-0002-5013-8361
Sabina VatterPsycho-Oncology Co-operative Research Group, School of Psychology, University of Sydney, Sydney, NSW, Australia.
Christine E NapierGarvan Institute of Medical Research, Sydney, NSW, Australia.ORCID 0000-0001-8009-7735
Nicci BartleyPsycho-Oncology Co-operative Research Group, School of Psychology, University of Sydney, Sydney, NSW, Australia.ORCID 0000-0001-9052-1616
Katherine TuckerHereditary Cancer Centre, Prince of Wales Medical School, Prince of Wales Hospital, University of New South Wales, Randwick, NSW, Australia.
Mandy L BallingerGarvan Institute of Medical Research, St Vincent's Clinical School, UNSW, Sydney, NSW, Australia.ORCID 0000-0002-9706-0514
David M ThomasGarvan Institute of Medical Research, St Vincent's Clinical School, UNSW, Sydney, NSW, Australia.ORCID 0000-0002-2527-5428
PiGeOn Project

Funding

Cancer Institute NSW 2017/ECF002National Health and Medical Research Council 1124749
6 · The paper itself

Abstract

Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n = 397) completed a questionnaire prior to undergoing MP (n = 356/397). A subset (n = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered.

Indexed as

NeoplasmsAdultAgedBiopsyCross-Sectional StudiesFemaleGenetic TestingGenomicsHumansMaleMiddle AgedOwnershipSurveys and Questionnairesgenomicsmedical ethicspatient perspectivestumor biopsy

Identifiers

PMID38713191
PMCPMC11379649

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.