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Turon H, Waller A, Clinton-McHarg T, et al. The Perspectives of Haematological Cancer Patients on Tissue Banking. Oncol Ther. 2016;4(1):91-102doi: 10.1007/s40487-016-0019-x.
Turon, H., Waller, A., Clinton-McHarg, T., Boyes, A., Fleming, J., Marlton, P., Harrison, S. J., & Sanson-Fisher, R. (2016). The Perspectives of Haematological Cancer Patients on Tissue Banking. Oncology and therapy, 4(1), 91-102. https://doi.org/10.1007/s40487-016-0019-x
Turon, Heidi, et al. "The Perspectives of Haematological Cancer Patients on Tissue Banking." Oncology and therapy vol. 4,1 (2016): 91-102. doi: https://doi.org/10.1007/s40487-016-0019-x
Turon H, Waller A, Clinton-McHarg T, Boyes A, Fleming J, Marlton P, Harrison SJ, Sanson-Fisher R. The Perspectives of Haematological Cancer Patients on Tissue Banking. Oncol Ther. 2016;4(1):91-102. doi: 10.1007/s40487-016-0019-x. Epub 2016 May 03. PMID: 28261642; PMCID: PMC5315074.
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Oncol Ther. 2016;4(1):91-102. doi: 10.1007/s40487-016-0019-x. Epub 2016 May 03.

The Perspectives of Haematological Cancer Patients on Tissue Banking.

Oncology and therapy

Heidi Turon, Amy Waller, Tara Clinton-McHarg, Allison Boyes, Jennifer Fleming, Paula Marlton, Simon J Harrison, Rob Sanson-Fisher

Affiliations

  1. School of Medicine and Public Health, Priority Research Centre for Health Behaviour, University of Newcastle, Newcastle, NSW Australia ; Hunter Medical Research Institute, Newcastle, NSW Australia.
  2. Faculty of Medicine, School of Public Health, Centre for Values, Ethics and the Law in Medicine (VELiM), The University of Sydney, Sydney, NSW Australia.
  3. Division of Cancer Services, Department of Haematology, Princess Alexandra Hospital, Brisbane, QLD Australia ; School of Medicine, University of Queensland, Brisbane, QLD Australia.
  4. Haematology Department, Peter MacCallum Cancer Centre, East Melbourne, VIC Australia.

PMID: 28261642 PMCID: PMC5315074 DOI: 10.1007/s40487-016-0019-x

Abstract

BACKGROUND: A high level of support for tissue banking has been identified amongst both the general public and patients. However, much debate remains about the regulatory framework of tissue banks.

OBJECTIVE: This study explored the views of haematological cancer patients regarding tissue banking and how tissue banks should operate.

METHODS: Haematological cancer patients from three outpatient clinics in Australia completed a questionnaire examining their preferences for tissue banking as well as items about their sociodemographic characteristics, disease and treatment history.

RESULTS: The majority of participants (95%) reported being willing to allow their leftover tissue to be used for medical research. Three quarters (76%) supported the idea of their medical record being linked to their tissue sample, and 77% preferred a blanket (one-off) consent model for future research use of their tissue sample. Only 57 (27%) participants had been asked to give a tissue sample for research, 98% of whom gave permission.

CONCLUSION: The majority of haematological cancer patients are willing to donate their leftover tissue to a tissue bank and have their medical records linked to tissue samples and prefer a one-off consent process. These novel data from potential donors inform the debate about how tissue banks might operate.

FUNDING: Strategic Research Partnership Grant from the Cancer Council NSW to the Newcastle Cancer Control Collaborative (New-3C) and infrastructure funding from the Hunter Medical Research Institute (HMRI). A.W. is supported by an Australian Research Council DECRA fellowship (DE150101262). T.C.M. was supported by a Leukaemia Foundation of Queensland Post-Doctoral Fellowship. A.B. is supported by National Health and Medical Research Council (APP1073317) and Cancer Institute NSW (13/ECF/1-37) Early Career Fellowships.

Keywords: Biobanking; Consent; Hematology; Oncology; Tissue banking

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