Bioethics Beyond Altruism Donating and Transforming Human Biological Materials

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78 C. MacGregor et al.


(Bollschweiler et al. 2008 ; Ryan et al. 2008 ; Synnot et al. 2014 ). The
information provided must be communicated in a clear and non-spe-
cialised way to the public, which may represent a challenge for research-
ers. Another method has been the use of comprehension tests to ensure
that participants have a comprehensive understanding of the informa-
tion and consent requirements, but these have not been widespread
(Buccini 2009 ). However, comprehension tests have been shown to help
identify gaps in participants’ knowledge, identify questions for partici-
pants and also improve consent understanding (Buccini 2009 ).
The lead researchers in the team sought an innovative method to make
informed consent an interactive process. In order to gain an understanding
of the validity of an interactive consent process, research participants in the
tissue donation study were assigned to three groups with different modes
of the delivery of informed consent, and were then asked, immediately
following the biopsy collection, to complete a questionnaire that assessed
their understanding of the project information and consent process.
The first group of research participants were assigned the standard
information and informed consent procedures, based upon the work of
Aalto-Setälä and colleagues (2009), and were then assessed their under-
standing of the consent process through a questionnaire. The second
group were shown a video animation that was developed by the research
team (comprising of clinicians, scientists and social scientists). The video
animation focused on communicating poorly understood concepts found
in the recall questionnaire. The video animation was shown to this second
group and then was assessed by using a questionnaire, which participants
completed after viewing the video animation (http://ipscdb.org). The
remainder of participants underwent an interactive consent process. The
third and final group received the revised ethics and informed consent
procedure utilising the standard method and the video animation.


Does Interactive Informed Consent Work?


In assessing the interactive informed consent procedure, 147 partici-
pants understanding of the iPSC consent process were recorded. Of
these, 32.7% (48) were in the standard consent group, 34.0% (50)

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