74 C. MacGregor et al.
Results of the Recall of Informed Consent
A total of 234 questionnaires were distributed, with 153 (65.4%)
responses received. The median duration between sample dona-
tion and follow-up questioning was 313 days (range 10–573 days),
while the self-reported median time since biopsy was 365 days (range
10–1095 days). A great number of participants (103 or 73.0%) did
not access any additional information about iPSC prior to involvement
with this study, and 123 (88.5%) people reported feeling a high degree
of trust in the research team. When questioned about the most useful
source of information, over half the participants (80 or 57.6%) felt that
the research team on the day of collection was the best source for infor-
mation. Only 55 (39.6%) reported that the information sheet was most
beneficial. One hundred and fifteen (81.6%) participants stated that
they had read the entire information pamphlet at least once.
A total of 132 (93.6%) of participants reported that they felt ade-
quately informed following the consent process. There was also a high
degree of trust established between the participant and the research
team as 136 (97.8%) participants felt able to ask questions during the
consent process. A large proportion (129, 91.5%) of study participants
believed they understood what was meant by ‘stem cell’. However, there
was low recall about information relating to the fate of the stem cells
that would be created from the tissue sample. Only 22 (16.1%) and
71 (51.8%) people knew that their sample could be maintained indefi-
nitely or be differentiated into any other cell in the adult body.
Interestingly, a participant’s level of education, knowledge of medical
science or personal investment did not appear to influence the number
of correct responses (p > 0.05). Notably, the time since tissue biopsy did
not influence consent recall or understanding about stem cell biology. A
total of 104 (75.9%) respondents were aware that their samples would
be used to create new treatments and tests, but only 41 (29.9%) appre-
ciated that pharmaceutical companies could be involved in this process.
Some information that was clearly stated on the participant’s informa-
tion and consent form, such as the use of animals in scientific experi-
ments, received a very low recall rate 25 (18.2%).