3 The Immortal Life of Ethics? The Alienation of Body Tissue ... 69stage of many trials: therefore, it is necessary to raise this issue during
the ethics and informed consent procedure.
Participant Benefit
From the literature, we can observe that the underlying motivation for
research participants to be involved in iPSC research is mainly altruis-
tic, such as the desire to assist in the development of cures for debilitat-
ing diseases (Dasgupta et al. 2014 ). However, the translation of science
into therapies poses two main problems for research participants. First,
while participants may hope they will benefit from therapies that may
develop from the research, it is important that researchers inform par-
ticipants that the development of new clinical therapies can take dec-
ades, if it happens at all. Second, it is important that researchers inform
participants of any financial and propriety interests, such as whether the
research may lead to testing or treatments that become the property of
private companies or organisations. It is also important to inform par-
ticipants that they would not receive financial compensation or have a
right to the testing, treatments or property developed from the research,
unless otherwise stated and agreed to by the research participant.
Edwards et al. ( 1998 ) suggest that self-interest was a key motivation for
participants to enrol in a clinical trial. As the authors point out, self-
interest is a somewhat strange motivation, as participants are unlikely to
prospectively gain anything from their participation due to the time lag
in translational pathways from bench to bedside (Edwards et al. 1998 ).
Within our study, participants framed their participation as ‘altruistic’,
but hoped to gain from the iPSC research in the future. This suggests
that participants’ motivation for participating in research falls along a
continuum between altruism and self-interest.
There have been several controversies recently that demonstrate a
systematic lack of clear communication between researchers, partici-
pants and the propriety rights and ownership of samples and research
derived from these samples. One of the most well-known cases in
recent years was that of the Alaskan engineer John Moore, who filed
a lawsuit against a physician who created an immortal cell line from
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