76 C. MacGregor et al.
research participation and the follow-up study asking about ethics and
informed consent procedures. However, within our own study, length
of time did not appear to be a key factor, as research participants who
donated their tissue within six months of the follow-up study did not
appear to have a significantly greater recall or understanding of ethics
and informed consent procedures. Given the potentially immortal life
of the iPSC line derived from tissue samples, it is therefore critical that
recall of consent is not lost so quickly.
Another core issue to emerge from our data was the gap between the
perceived and actual understanding of the information about the iPSCs
provided during the information and consent procedure. Interestingly,
participants generally overestimated their knowledge regarding stem
cells. Other studies have reported a similar disconnect between per-
ceived and actual understanding within ethics and informed consent
procedures (Sepucha et al. 2010 ). Sepucha et al. ( 2010 ) suggest that
trust was an important factor in facilitating a research participant’s level
of understanding. As noted earlier, our research participants expressed
great trust in the information given by the research team. Despite this
trust, participants did not ask any questions that explored important
ethical issues or concerns about their consent. Some studies have sug-
gested that formalised tests to assess a research participant’s comprehen-
sion of ethics and informed consent procedures could help to improve
understanding (Buccini 2009 ; Ryan et al. 2008 ).
After examining our research participants’ recall of the ethics and
informed consent procedures, there are three limitations that need to
be noted. The first is that our research population was similar in terms
of ethnicity, socio-economic status, education and religious beliefs. The
research sample had a mean age of 65 years (27-89 range), 43.3% were
female, 64.5% had a religious affiliation, with Christianity being the
most dominant religion—Roman Catholic (39%), and then Protestant
(7.8%). 36.9% of participants were tertiary educated, with 14.9% hav-
ing a background in health or medicine. Therefore, a sample with more
diverse ethnic, cultural and religious beliefs may have created a dif-
ferent result. The second concerns the relative novelty of iPSCs as an
innovative scientific tool. iPSCs may not be widely known to the gen-
eral public beyond short sound bites within the mainstream media, so