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Open Access Highly Accessed Research article

Cancer patient perceptions on the ethical and legal issues related to biobanking

Zubin Master12, Jaime O Claudio3, Christen Rachul2, Jean CY Wang4, Mark D Minden5 and Timothy Caulfield6*

Author Affiliations

1 Alden March Bioethics Institute, Albany Medical College, 47 New Scotland Avenue, MC 153, Albany, NY, 12208-3478, USA

2 Health Law and Science Policy Group, Rm 461 Law Centre, University of Alberta, 89 Avenue and 111 Street, Edmonton, AB, T6G 2H5, Canada

3 Ontario Cancer Institute, Princess Margaret Hospital, University Health Network, 101 College Street, TMDT 3-912, Toronto, ON, M5G 1L7, Canada

4 Campbell Family Cancer Research Institute/Ontario Cancer Institute, University Health Network, Faculty of Medicine, University of Toronto, MaRS TMDT 8-363 101 College Street, Toronto, ON, M5G 1L7, Canada

5 Princess Margaret Cancer Center, Campbell Family Cancer Research Institute/Ontario Cancer Institute, University Health Network, Faculty of Medicine, University of Toronto, 610 University Avenue, 9-113, Toronto, ON, M5G 2M9, Canada

6 Health Law and Science Policy Group, Rm 462 Faculty of Law and School of Public Health, Law Centre, University of Alberta, 89 Avenue and 111 Street, Edmonton, AB, T6G 2H5, Canada

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BMC Medical Genomics 2013, 6:8  doi:10.1186/1755-8794-6-8

Published: 8 March 2013

Abstract

Background

Understanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy.

Methods

We examined the views of leukemia patients undergoing treatment in clinics located in the Princess Margaret Hospital in Toronto, Ontario, Canada. An initial written survey was provided to 100 patients (64.1% response rate) followed by a follow-up survey (62.5% response rate) covering the topics of informed consent, withdrawal, anonymity, incidental findings and the return of results, ownership, and trust.

Results

The majority (59.6%) preferred one-time consent, 30.3% desired a tiered consent approach that provides multiple options, and 10.1% preferred re-consent for future research. When asked different questions on re-consent, most (58%) reported that re-consent was a waste of time and money, but 51.7% indicated they would feel respected and involved if asked to re-consent. The majority of patients (62.2%) stated they had a right to withdraw their consent, but many changed their mind in the follow-up survey explaining that they should not have the right to withdraw consent. Nearly all of the patients (98%) desired being informed of incidental health findings and explained that the information was useful. Of these, 67.3% of patients preferred that researchers inform them and their doctors of the results. The majority of patients (62.2%) stated that the research institution owns the samples whereas 19.4% stated that the participants owned their samples. Patients had a great deal of trust in doctors, hospitals and government-funded university researchers, moderate levels of trust for provincial governments and industry-funded university researchers, and low levels of trust towards industry and insurance companies.

Conclusions

Many cancer patients surveyed preferred a one-time consent although others desired some form of control. The majority of participants wanted a continuing right to withdraw consent and nearly all wanted to be informed of incidental findings related to their health. Patients had a great deal of trust in their medical professionals and publically-funded researchers as opposed to profit-based industries and insurance companies.

Keywords:
Biobank; Tissue repository; Cancer patient perspectives; Consent; Withdrawal; Anonymity; Incidental findings; Return of results; Ownership; Trust