Bioethics Beyond Altruism Donating and Transforming Human Biological Materials

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3 The Immortal Life of Ethics? The Alienation of Body Tissue ... 65

of a video animation and an interactive consent method which com-
bined two of the previous methods. In this chapter, we suggest that for
innovative technologies, such as iPSC, there is a great need for research-
ers to take particular care in communicating the aims, goals and meth-
ods of the research, so that research participants are able to make a fully
informed choice. This is especially important for participants in iPSC
research, as iPSC lines derived from their tissue have the capacity for
prolonged self-renewal akin to immortalisation and may effectively out-
live the original donor and be widely distributed to researchers seeking
to help future generations. Thus, it is vital to develop a refined consent
process, not only for biomedical research, but for scientific research
more generally, that outlines both current applications and potential
future uses of a participant’s biological tissue and ensures appropriate
ethical collection and informed consent.


Issues of Ethics and Informed Consent in iPSC

Research

Throughout medical history there have been a number of cases where
biomedical research has exploited people and their consent, such as the
experiments conducted by Ernst Rüdin and Josef Mengele during the
Nazi regime in Germany (Seidelman 1988 ); the covert biological and
chemical warfare research undertaken in China by the Imperial Japanese
Army’s Unit 731 (Nie 2002 ) and the Tuskegee syphilis controversy
in the USA (Jones 1993 ). Since, World War Two, The Declaration of
Helsinki: Ethical Principles for Medical Research Involving Human
Subjects has mandated that study participants, or their legal guard-
ians, must be adequately informed of all relevant information prior to
provision of their tissue sample through the process of informed con-
sent (Sims 2010 ; WMA 2001 ). There are several ethical issues that are
important to consider within iPSC research: the immortalisation of cell
lines, withdrawal of consent, the sharing of cell lines, animal research,
participant benefit and the communication of relevant information to
obtain informed consent.


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