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

Recall of participation in research projects in cancer genetics: some implications for research ethics
Recall of participation in research projects in cancer genetics: some implications for research ethics
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.
1477-7509
180-184
Cooke, Sarah
c5e8adab-bade-4801-95f2-70d37b013d5e
Crawford, Gillian
c49ec103-2936-4897-8f25-96abe25b3a9f
Parker, Michael
f08fdd2b-3c14-472f-b222-0ced5bb71bd4
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Hallowell, Nina
671cbd1f-fb44-40bc-86eb-be2b1d4d73ed
Cooke, Sarah
c5e8adab-bade-4801-95f2-70d37b013d5e
Crawford, Gillian
c49ec103-2936-4897-8f25-96abe25b3a9f
Parker, Michael
f08fdd2b-3c14-472f-b222-0ced5bb71bd4
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Hallowell, Nina
671cbd1f-fb44-40bc-86eb-be2b1d4d73ed

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).

Record type: Article

Abstract

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.

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Published date: December 2008

Identifiers

Local EPrints ID: 182489
URI: http://eprints.soton.ac.uk/id/eprint/182489
ISSN: 1477-7509
PURE UUID: fbceea6b-651a-440b-a5d8-4a3ff35ee756
ORCID for Anneke Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

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Date deposited: 19 Apr 2011 13:57
Last modified: 15 Mar 2024 03:11

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Contributors

Author: Sarah Cooke
Author: Michael Parker
Author: Anneke Lucassen ORCID iD
Author: Nina Hallowell

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