3 The Immortal Life of Ethics? The Alienation of Body Tissue ... 77participants in our study relied heavily on the information given as part
of the research project to inform them about the issue. We also found
that the majority of research participants did not access any information
beyond what was provided during the information and consent process.
This underscores the importance of detailed and impartial informa-
tion about the science and how clinical benefit is communicated to the
public within research ethics and informed consent procedures. A third
and final issue concerns recall bias. As our ethical and informed consent
recall study was retrospective in nature, recall bias may have been intro-
duced. Although our study research population will not be representa-
tive of all iPSC research participants, we would argue that our results
would be representative of similar large-scale iPSC projects.
Despite our study’s ethics and informed consent procedures being
formalised from published guidelines (Dagusta et al. 2014 ; Aalto-Setälä
et al. 2009 ), our results suggest that certain issues about consent were
not well understood by participants. As stem cell science often attracts
great expectations in patients, it is important for researchers to ensure
that participants are making an informed choice to participate in the
research. Our research also suggests that new methods are required to
help enhance the communication of information and help inform
research participants in a manner that helps to facilitate greater recall of
ethics and informed consent procedures. It is to this issue we now turn.
Improving Informed Consent
To date, a number of methods have been attempted in order to help
improve informed consent and outline information for research partic-
ipants. A number of innovative techniques have been trialled to help
enhance informed consent communication and understanding, in
addition to standard verbal and written consent procedures, in order
to ensure participants are sufficiently informed. One such method has
been the use of audio-visual aids, whereby research, ethics and con-
sent information is conveyed using video/digital based technology.
Within the literature there are mixed reports about the effectiveness of
the use of video and animation regarding the research consent process
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