Why Might People Donate Tissue for Cancer Research? Insights from Organ/Tissue/Blood Donation and Clinical Research

Axler, Renata; Irvine, Rob; Lipworth, Wendy; Morrell, Bronwen; Kerridge, Ian

doi:10.1159/000164216

Cited by 25 publications

(24 citation statements)

References 75 publications

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“…We found that a brief verbal explanation by the nurse practitioners or physician of the 'optout plus' procedure was feasible and appreciated by patients. This was also suggested by others (Axler et al, 2008;Johnsson et al, 2008b;Hewitt et al, 2009). Others found indications that less privileged groups might be more reluctant to research with tissue (Helft et al, 2007) and may want to be asked for consent in a stricter procedure.…”

Section: Discussionmentioning

confidence: 68%

A trial of consent procedures for future research with clinically derived biological samples

et al. 2009

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BACKGROUND: The aims of this study were to determine which consent procedure patients prefer for use of stored tissue for research purposes and what the effects of consent procedures on actual consenting behaviour are. METHODS: We offered 264 cancer patients three different consent procedures: 'one-time general consent' (asked written informed consent), 'opt-out plus' (had the opportunity to opt out by a form), or the standard hospital procedure (control group). The two intervention groups received a specific leaflet about research with residual tissue and verbal information. The control group only received a general hospital leaflet including opt-out information, which is the procedure currently in use. Subsequently, all patients received a questionnaire to examine their preferences for consent procedures. RESULTS: In all, 99% of patients consented to research with their residual tissue. In the 'one-time consent' group 85% sent back their consent form. Patients preferred 'opt-out plus' (43%) above 'one-time consent' (34%) or 'opt-out' (16%), whereas 8% indicated that they did not need to receive information about research with residual tissues or be given the opportunity to make a choice. CONCLUSIONS: The 'opt-out plus' procedure, which places fewer demands on administrative resources than 'one-time consent', can also address the information needs of patients.

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Section: Discussionmentioning

confidence: 68%

A trial of consent procedures for future research with clinically derived biological samples

et al. 2009

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“…Les études qualitatives menées soulignent cette tendance favorable au recueil d'un consentement. Si certains patients peuvent craindre que le recueil des consentements puisse retarder la recherche [16], la plupart soulignent le caractère positif de cette procédure, signe du respect de l'autonomie des patients, acte important de solidarité et de réciprocité renforçant les liens avec les soignants [6,17,18]. Il est toutefois nécessaire de s'assurer de la qualité de la procédure.…”

Section: Perception Par La Population Et Les Patients De L'existence unclassified

La recherche biomédicale à l’ère des tumorothèques

et al. 2012

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“…The Vanderbilt biobank uses an ‘opt-out’ approach to informed consent [29] which, while increasing the likelihood of increased participation, still challenges the well-accepted norm of informed consent [30]. Common to all perspectives on this issue is the perceived trustworthiness of the scientists conducting this research [31,32,33]. …”

Section: Precaution Protection and The Pace Of Progressmentioning

confidence: 99%

Research Ethics in the Era of Personalized Medicine: Updating Science’s Contract with Society

Meslin

Cho

2010

Public Health Genomics

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With the completed sequence of the human genome has come the prospect of substantially improving the quality of life for millions through personalized medicine approaches. Still, any advances in this direction require research involving human subjects. For decades science and ethics have enjoyed an allegiance reflected in a common set of ethical principles and procedures guiding the conduct of research with human subjects. Some of these principles emphasize avoiding harm over maximizing benefit. In this paper we revisit the priority given to these ethical principles – particularly the principles that support a cautious approach to science – and propose a reframing of the ‘social contract’ between science and society that emphasizes reciprocity and meeting public needs.

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Why Might People Donate Tissue for Cancer Research? Insights from Organ/Tissue/Blood Donation and Clinical Research

Cited by 25 publications

References 75 publications

A trial of consent procedures for future research with clinically derived biological samples

A trial of consent procedures for future research with clinically derived biological samples

La recherche biomédicale à l’ère des tumorothèques

Research Ethics in the Era of Personalized Medicine: Updating Science’s Contract with Society

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