3 The Immortal Life of Ethics? The Alienation of Body Tissue ... 73information of the participant; to assess participants’ personal invest-
ment in the research; to establish whether they or a family member
was affected with a disease relevant to the research; and, specifically,
to ask participants about the tissue collection study’s consent process.
Participants were also asked to record the time elapsed since their tis-
sue donation and were asked to provide details of existing knowledge
or sources of supplementary information accessed outside of the infor-
mation provided by the research team. The final sections of the ques-
tionnaire were designed to gain an understanding of the participants’
knowledge of basic stem cell properties, recall of the consent procedure
and their personal attitudes towards aspects of iPSC research. Ten Likert
questions were used to assess whether participants agreed with particu-
lar statements, and ten separate true or false questions were also asked.
Participants who had previously provided tissue samples for this iPSC
research were sent the questionnaire by email or by hard copy to their
last known postal address, or emailed a copy after a non-response of two
weeks.
Understanding of consent information was gauged by results from
13 questions in the last two sections of the questionnaire. For the final
section’s dependent variables, we collapsed the five-point Likert scale
to a three-point scale (‘disagree’, ‘neutral’, ‘agree’) merging the ‘strongly
agree’ and ‘agree’ options and the ‘strongly disagree’ and ‘disagree’
options. Responses were then labelled as ‘correct’ or ‘incorrect’ depend-
ing on the appropriate answer to each question. ‘Unsure’ and ‘I don’t
know’ answers were grouped in the ‘incorrect’ category. Data were
processed using Statistical Package for the Social Sciences, IBM (ver-
sion 23.0; SPSS Inc., Chicago, IL, USA). Associations between con-
sent recall and predictor variables such as time since consent, level of
education, family history of genetic disease, previous work in health
sciences field, perceived understanding of consent and accessing addi-
tional sources of information about the study were calculated using the
Pearson Chi-squared test. Attitudes towards applications of stem cell
research were compared to variables such as religious affiliation and
family history of genetic disease. Results were considered significant at
P < 0.05.
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