Patient Consent: A Major Obstacle in Tissue Banking? Perspectives from the UC Davis Cancer Center

Gandour‐Edwards, Regina; Nguyen, Huong; Castillo, Michele; Soares, Stephanie

doi:10.1089/cpt.2007.0506

Cited by 3 publications

(1 citation statement)

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“…However, these social ideals would not suffice unless they also furthered individuals’ direct interests in some way or another. Previous studies on cancer patients’ participation in clinical trials have shown that although being of service to future patients was the most frequently mentioned motive, it came second to self‐interest in some cases 40,41 . Although the patients surveyed here stated that donating tissues was a means of helping other patients, the present findings show on the whole that contributing to biobanking efforts partly works because it provides patients with some fairly insubstantial indirect benefits (it creates hope, reduces the asymmetry between patients and doctors, gives patients a sense of personal reward and gives their tumour tissue value).…”

Section: Discussionmentioning

confidence: 44%

Contributing to research via biobanks: what it means to cancer patients

Pellegrini¹,

Chabannon²,

Mancini³

et al. 2012

Health Expectations

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Context and objective Biobanks have become strategic resources for biomedical and genetic research. The aim of the present empirical qualitative study was to investigate how patients with cancer perceive and experience the process of donation to biobanks, focussing on the subjective meanings associated with their decisions when they are asked in a routine context to agree to their own biological specimens being used for research projects.Design A qualitative study, using semi-structured interviews to explore in depth the reasons why patients with cancer agree to participating in biobanking.Participants Nineteen patients (aged 28-82 years) being treated for colorectal cancer or leukaemia at a French cancer centre participated in this study.

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Section: Discussionmentioning

confidence: 44%

Contributing to research via biobanks: what it means to cancer patients

Pellegrini¹,

Chabannon²,

Mancini³

et al. 2012

Health Expectations

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Tumor Grade Predicts Tumor Proportion in Fresh Frozen Tissue Samples for Breast Cancer Research

Gandour‐Edwards¹,

Taylor

Beckett

2008

Cell Preservation Technology

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Consent for Biobanking: Assessing the Understanding and Views of Cancer Patients

Mancini

Pellegrini²,

Viret³

et al. 2011

JNCI: Journal of the National Cancer Institute

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Cancer patients were questioned about the consent process in a context in which they were routinely requested to donate tumor samples to research. After in-depth interviews of 19 patients, a 12-page questionnaire was designed and mailed to 745 patients who had been recently treated for colorectal cancer, breast cancer, or a hematological malignancy at a French Regional Cancer Center at which an opt-in biobanking system has existed since 2002. The response rate was 77.0% (N = 574). Among responding patients, 349 (60.8%) of the 574 were in favor of a formal and signed consent. Concordance was low (kappa = 0.23) between the number of patients who declared in the survey that they had given consent (213 of 574 [37.1%]) vs the number for whom registered consent had been recorded (267 of 574 [46.5%]). Only 2 (0.3%) of the 574 patients stated that they had signed a refusal, and only 88 (41.3%) of the 213 patients who remembered giving consent understood that their consent for biobanking also covered authorization to use their clinical data. We conclude that the opt-in consent procedure is positively perceived by most patients but should be improved for a better understanding and possibly an even better adherence to the consent process.

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Patient Consent: A Major Obstacle in Tissue Banking? Perspectives from the UC Davis Cancer Center

Cited by 3 publications

References 0 publications

Contributing to research via biobanks: what it means to cancer patients

Contributing to research via biobanks: what it means to cancer patients

Tumor Grade Predicts Tumor Proportion in Fresh Frozen Tissue Samples for Breast Cancer Research

Consent for Biobanking: Assessing the Understanding and Views of Cancer Patients

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