Barriers to the release of human tissue for clinical trials research in the UK: a national survey of cellular pathology laboratories on behalf of the National Cancer Research Institute's Cellular Molecular Pathology (CM-Path) initiative

Philip S Macklin; Andrew Hall; Jessica Lee; Jane Hair; Valerie Speirs; Gareth J Thomas; Karin A Oien; Clare Verrill

doi:10.1136/jclinpath-2018-205476

Barriers to the release of human tissue for clinical trials research in the UK: a national survey of cellular pathology laboratories on behalf of the National Cancer Research Institute's Cellular Molecular Pathology (CM-Path) initiative

Philip S Macklin (Corresponding Author), Andrew Hall, Jessica Lee, Jane Hair, Valerie Speirs, Gareth J Thomas, Karin A Oien, Clare Verrill

Medical Sciences

Research output: Contribution to journal › Article › peer-review

2 Citations (Scopus)

Abstract

AIM: To survey UK cellular pathology departments regarding their attitudes and practices relating to release of human tissue from their diagnostic archives for use in clinical trial research.

METHODS: A 30-item questionnaire was circulated to the National Cancer Research Institute's Cellular Molecular Pathology initiative and Confederation of Cancer Biobanks mailing lists. Responses were collected over a 10-month period from November 2016 to August 2017.

RESULTS: 38 departments responded to the survey, the majority of which regularly receive requests for tissue for research purposes. Most requests come from academia and financial support to facilitate tissue release comes from a variety of sources. A range of practices were reported in relation to selection of the most appropriate sample to release, consent checking, costing and governance frameworks.

CONCLUSIONS: This survey demonstrates wide variation in practice across the UK and identifies barriers to release of human tissue for clinical trial research. Until we can overcome these obstacles, patient samples will remain inaccessible to research. Therefore, this study highlights the urgent need for clear and coordinated national guidance on this issue.

Original language	English
Pages (from-to)	52-57
Number of pages	6
Journal	Journal of Clinical Pathology
Volume	72
Issue number	1
Early online date	1 Oct 2018
DOIs	https://doi.org/10.1136/jclinpath-2018-205476
Publication status	Published - 31 Jan 2019

Bibliographical note

The NCRI’s CM-Path initiative was established in 2016 with the aim of reinvigorating academic pathology. It is funded as a collaborative venture between 10 of the NCRI partner organisations: Bloodwise, Breast Cancer Now, Cancer Research UK, the Chief Scientist Office (Scotland), the Department of Health and Social Care (England), Health and Care Research Wales, Health and Social Care (Northern Ireland), the Medical Research Council, Prostate Cancer UK and Tenovus Cancer Care. These organisations did not participate in study design; collection, analysis and interpretation of data; writing the report or the decision to submit the paper for publication.

Keywords

Cancer
Cancer research
Laboratory management
Academies and Institutes
Laboratories
Humans
Pathology, Molecular/ethics
Surveys and Questionnaires
United Kingdom
Clinical Trials as Topic/ethics
Pathology, Clinical/ethics
Specimen Handling/ethics

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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Macklin, P. S., Hall, A., Lee, J., Hair, J., Speirs, V., Thomas, G. J., Oien, K. A., & Verrill, C. (2019). Barriers to the release of human tissue for clinical trials research in the UK: a national survey of cellular pathology laboratories on behalf of the National Cancer Research Institute's Cellular Molecular Pathology (CM-Path) initiative. Journal of Clinical Pathology, 72(1), 52-57. https://doi.org/10.1136/jclinpath-2018-205476

Barriers to the release of human tissue for clinical trials research in the UK: a national survey of cellular pathology laboratories on behalf of the National Cancer Research Institute's Cellular Molecular Pathology (CM-Path) initiative. / Macklin, Philip S (Corresponding Author); Hall, Andrew; Lee, Jessica et al.
In: Journal of Clinical Pathology, Vol. 72, No. 1, 31.01.2019, p. 52-57.

Research output: Contribution to journal › Article › peer-review

Macklin, PS, Hall, A, Lee, J, Hair, J, Speirs, V, Thomas, GJ, Oien, KA & Verrill, C 2019, 'Barriers to the release of human tissue for clinical trials research in the UK: a national survey of cellular pathology laboratories on behalf of the National Cancer Research Institute's Cellular Molecular Pathology (CM-Path) initiative', Journal of Clinical Pathology, vol. 72, no. 1, pp. 52-57. https://doi.org/10.1136/jclinpath-2018-205476

Macklin PS, Hall A, Lee J, Hair J, Speirs V, Thomas GJ et al. Barriers to the release of human tissue for clinical trials research in the UK: a national survey of cellular pathology laboratories on behalf of the National Cancer Research Institute's Cellular Molecular Pathology (CM-Path) initiative. Journal of Clinical Pathology. 2019 Jan 31;72(1):52-57. Epub 2018 Oct 1. doi: 10.1136/jclinpath-2018-205476

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abstract = "AIM: To survey UK cellular pathology departments regarding their attitudes and practices relating to release of human tissue from their diagnostic archives for use in clinical trial research.METHODS: A 30-item questionnaire was circulated to the National Cancer Research Institute's Cellular Molecular Pathology initiative and Confederation of Cancer Biobanks mailing lists. Responses were collected over a 10-month period from November 2016 to August 2017.RESULTS: 38 departments responded to the survey, the majority of which regularly receive requests for tissue for research purposes. Most requests come from academia and financial support to facilitate tissue release comes from a variety of sources. A range of practices were reported in relation to selection of the most appropriate sample to release, consent checking, costing and governance frameworks.CONCLUSIONS: This survey demonstrates wide variation in practice across the UK and identifies barriers to release of human tissue for clinical trial research. Until we can overcome these obstacles, patient samples will remain inaccessible to research. Therefore, this study highlights the urgent need for clear and coordinated national guidance on this issue.",

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AU - Hall, Andrew

AU - Lee, Jessica

AU - Hair, Jane

AU - Speirs, Valerie

AU - Thomas, Gareth J

AU - Oien, Karin A

AU - Verrill, Clare

N1 - The NCRI’s CM-Path initiative was established in 2016 with the aim of reinvigorating academic pathology. It is funded as a collaborative venture between 10 of the NCRI partner organisations: Bloodwise, Breast Cancer Now, Cancer Research UK, the Chief Scientist Office (Scotland), the Department of Health and Social Care (England), Health and Care Research Wales, Health and Social Care (Northern Ireland), the Medical Research Council, Prostate Cancer UK and Tenovus Cancer Care. These organisations did not participate in study design; collection, analysis and interpretation of data; writing the report or the decision to submit the paper for publication.

PY - 2019/1/31

Y1 - 2019/1/31

N2 - AIM: To survey UK cellular pathology departments regarding their attitudes and practices relating to release of human tissue from their diagnostic archives for use in clinical trial research.METHODS: A 30-item questionnaire was circulated to the National Cancer Research Institute's Cellular Molecular Pathology initiative and Confederation of Cancer Biobanks mailing lists. Responses were collected over a 10-month period from November 2016 to August 2017.RESULTS: 38 departments responded to the survey, the majority of which regularly receive requests for tissue for research purposes. Most requests come from academia and financial support to facilitate tissue release comes from a variety of sources. A range of practices were reported in relation to selection of the most appropriate sample to release, consent checking, costing and governance frameworks.CONCLUSIONS: This survey demonstrates wide variation in practice across the UK and identifies barriers to release of human tissue for clinical trial research. Until we can overcome these obstacles, patient samples will remain inaccessible to research. Therefore, this study highlights the urgent need for clear and coordinated national guidance on this issue.

AB - AIM: To survey UK cellular pathology departments regarding their attitudes and practices relating to release of human tissue from their diagnostic archives for use in clinical trial research.METHODS: A 30-item questionnaire was circulated to the National Cancer Research Institute's Cellular Molecular Pathology initiative and Confederation of Cancer Biobanks mailing lists. Responses were collected over a 10-month period from November 2016 to August 2017.RESULTS: 38 departments responded to the survey, the majority of which regularly receive requests for tissue for research purposes. Most requests come from academia and financial support to facilitate tissue release comes from a variety of sources. A range of practices were reported in relation to selection of the most appropriate sample to release, consent checking, costing and governance frameworks.CONCLUSIONS: This survey demonstrates wide variation in practice across the UK and identifies barriers to release of human tissue for clinical trial research. Until we can overcome these obstacles, patient samples will remain inaccessible to research. Therefore, this study highlights the urgent need for clear and coordinated national guidance on this issue.

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KW - Pathology, Clinical/ethics

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Barriers to the release of human tissue for clinical trials research in the UK: a national survey of cellular pathology laboratories on behalf of the National Cancer Research Institute's Cellular Molecular Pathology (CM-Path) initiative

Abstract

Bibliographical note

Keywords

UN SDGs

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