Recall of participation in research projects in cancer genetics: some implications for research ethics

Cooke, Sarah, Crawford, Gillian, Parker, Michael, Lucassen, Anneke and Hallowell, Nina (2008) Recall of participation in research projects in cancer genetics: some implications for research ethics. Clinical Ethics, 3, (4), 180-184. (doi:10.1258/ce.2008.008019).


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The aim of this study is to assess patients' recall of their previous research participation. Recall was established during interviews and compared with entries from clinical notes. Participants were 49 patients who had previously participated in different types of research. Of the 49 patients, 45 (92%) interviewees recalled 69 of 109 (63%) study participations. Level of recall varied according to the type of research, some participants clearly recalled the details of research aims, giving consent and research procedures. Others recalled procedures (e.g. DNA testing) but were unclear about their purpose. There was no significant effect of time on recall. Some types of research participation (e.g. DNA testing) may be recalled as clinical care. We argue that such misunderstandings may have the potential to undermine participants' ongoing consent, particularly in ongoing/longitudinal studies. Valid consent may be best achieved by re-assessing the scope of consent and relating it to the nature of the interventions themselves rather than the reasons for undertaking them.

Item Type: Article
Digital Object Identifier (DOI): doi:10.1258/ce.2008.008019
ISSNs: 1046-7890 (print)
Subjects: B Philosophy. Psychology. Religion > BJ Ethics
Q Science > QH Natural history > QH426 Genetics
R Medicine > RC Internal medicine > RC0254 Neoplasms. Tumors. Oncology (including Cancer)
Divisions : University Structure - Pre August 2011 > School of Medicine > Cancer Sciences
ePrint ID: 182489
Accepted Date and Publication Date:
December 2008Published
Date Deposited: 19 Apr 2011 13:57
Last Modified: 31 Mar 2016 13:36

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