title: The Perspectives of Haematological Cancer Patients on Tissue Banking.
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.
  
  
  CONCLUSIONS
  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.
  
  
  BACKGROUND
  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.
authors.affiliation: 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.
authors.forename: Heidi
authors.initials: H
authors.lastname: Turon
authors.affiliation: 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.
authors.forename: Amy
authors.initials: A
authors.lastname: Waller
authors.affiliation: 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.
authors.forename: Tara
authors.initials: T
authors.lastname: Clinton-McHarg
authors.affiliation: 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.
authors.forename: Allison
authors.initials: A
authors.lastname: Boyes
authors.affiliation: Faculty of Medicine, School of Public Health, Centre for Values, Ethics and the Law in Medicine (VELiM), The University of Sydney, Sydney, NSW Australia.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Fleming
authors.affiliation: Division of Cancer Services, Department of Haematology, Princess Alexandra Hospital, Brisbane, QLD Australia ; School of Medicine, University of Queensland, Brisbane, QLD Australia.
authors.forename: Paula
authors.initials: P
authors.lastname: Marlton
authors.affiliation: Haematology Department, Peter MacCallum Cancer Centre, East Melbourne, VIC Australia.
authors.forename: Simon J
authors.initials: SJ
authors.lastname: Harrison
authors.affiliation: 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.
authors.forename: Rob
authors.initials: R
authors.lastname: Sanson-Fisher
keywords: Biobanking; Consent; Hematology; Oncology; Tissue banking