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

Clinical Ethics 3 (4):180-184 (2008)
  Copy   BIBTEX


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



    Upload a copy of this work     Papers currently archived: 94,517

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Informed consent in clinical trials.G. P. Kovane, V. C. Nikoderm & O. Khondowe - 2022 - South African Journal of Bioethics and Law 15 (2):48-53.


Added to PP

38 (#416,096)

6 months
13 (#282,360)

Historical graph of downloads
How can I increase my downloads?

Author's Profile

Michael Parker
Marquette University