72 C. MacGregor et al.
Recall of Ethics and Informed Consent
in a Study on iPSCs
While informed consent guidelines for iPSC research have been estab-
lished, the need remains to determine the effectiveness of current mod-
els and procedures, in order to make sure that research participants
make an informed choice (Dagusta et al. 2014 ). Previous research has
shown that understanding and recall of consent procedures and infor-
mation is generally poor amongst study participants (Khan et al. 2014 ;
Tam et al. 2015 ). Our research team has been involved in the collection
of tissue samples from participants, which will be turned into iPSCs for
research into eye diseases. We sought to examine whether there was an
issue to do with participant recall of ethics and informed consent pro-
cedures and to gain knowledge of the participants’ understanding of
iPSC research. Furthermore, we sought to determine what demographic
and personal factors affected recall of information and consent. In order
to give information-recall some context, we also sought to examine
research participant’s motivation for taking part in the iPSC research
project and their perception of stem cell technologies.
Recall of Informed Consent
Research participants donating a tissue sample were provided with a
project information sheet that outlined the subject and significance of
the research. Participants were also given a written consent form to sign
and a revocation of consent form on the day of their collection. Prior to
the tissue sample collection, participants were verbally informed of the
purpose of the study by one of two investigators responsible for the tis-
sue collection. Participants were also asked whether they had any ques-
tions about the research or their tissue sample.
In order to gain insight into the research participants’ recall about
informed consent, their motivations for participating in the research
and their perception of stem cell technologies, a 35-item questionnaire
was designed. Our questionnaire sought to record the demographic