Bioethics Beyond Altruism Donating and Transforming Human Biological Materials

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3 The Immortal Life of Ethics? The Alienation of Body Tissue ... 67

Withdrawal of Consent


The right to withdraw consent is a cornerstone within contempo-
rary approaches to research ethics and is a particular feature of the
Declaration of Helsinki (WMA 2001 ). There are a number of avenues
for withdrawal of consent. Participants can request a cessation of con-
tact with the research team under an ongoing contact model, which
can mean the destruction of sample identifiers of the original specimen,
ceasing distribution of any materials, and even complete destruction
of their sample. However, with iPSCs, withdrawal may not be possi-
ble because cell lines may have been produced and research may have
been undertaken using these lines, which may have been shared with
other laboratories (Sugarman 2008 ). Other issues remain: do iPSCs
derived from tissues samples still constitute the participant’s own tissue?
(Lowenthal et al. 2012 ). There are those who argue that once an iPSC
line is derived from a participant’s cell it is no longer theirs, and instead
becomes the intellectual property of the university or biotechnology
company. Therefore, the limitations around withdrawing the cell line,
and the kinds of procedures this would entail, need to be clearly out-
lined in the consent process to satisfy the criteria of informed consent
(Dasgupta et al. 2014 ).


Sharing of Cell Lines


Each iPSC line is unique and possesses different characteristics and
morphology. Consequently, some cell lines will be more suitable for
certain research than others, and the sharing of iPSC lines between
researchers and laboratories may be necessary to enable replication and
ongoing progress in research. The International Charter of principles for
sharing bio-specimens and data, compiled by Mascalzoni et al. ( 2015 ),
suggests that an exception to consent allows existing biological materi-
als to be shared for research if they are de-identified. However, this pre-
sents a number of ethical problems that are unique to iPSC research, as
other forms of donation, such as tissue, blood and body parts are given
without restrictions on use. As iPSCs are virtually genetically identical


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