62 C. MacGregor et al.
The case of Henrietta Lacks, and the HeLa cell line, embodied the new pos-
sibilities of biomedical research in the post-World War Two era (Landecker
2007 : 140). The story of Henrietta Lacks and the creation of HeLa line has
been retold countless times: the young women who eight months after a
biopsy was diagnosed with a malignant tumour on her cervix and dies, but
her cells live on (Landecker 2007 : 141). The immortality of the HeLa line
is deeply tied to the personification of the cell. But what is often left behind
in retellings of the HeLa story are its implications for new cell technolo-
gies, such as induced pluripotent stem cells (iPSC). The case of Henrietta
Lacks is a cautionary tale about the consequences when biomedical research
negates ethics and informed consent procedures, and the often unequal
power relationship between researchers and research participants. It may be
unfair to judge the researchers who created HeLa in the 1950s retrospec-
tively. Yet, in the aftermath of World War Two, especially the Nazi atrocities
in Europe and the war crimes committed by the Imperial Japanese Army’s
Unit 731 (Gold 2011 ), an ethical duty to research participants has become
a cornerstone of research and is embodied in documents, such as the
Declaration of Helsinki – Ethical Principles for Medical Research Involving
Human Subjects (WMA 2001 ). However, despite such declarations, there
are ongoing concerns about the ethics of informed consent with respect to
biomedical research. It is essential that biomedical research participants are
fully informed about what will happen to them during the research pro-
cess—in particular, what collected tissue will be used for. To date, there has
been little research that examines the research process and participant atti-
tudes towards the donation of biological material for human iPSC research
(Dasgupta et al. 2014 ; McCaughey et al. 2016a, b). This chapter is an
attempt to fill this gap in the literature. It seeks to examine issues unique
to iPSC research and to provide a framework, in order to help improve
ethics and consent procedures to ensure research participants can make an
informed choice to participate in the research.
Pluripotent stem cells are defined by two main characteristics: one,
the ability and capacity for prolonged self-renewal akin to immortalisa-
tion; two, their pluripotency, meaning they are capable of turning into
any cell type of the human body (Takahashi et al. 2007 ; Thomson et al.
2008 ). Human embryonic stem cells (hESCs) are perhaps the mostly
widely known, due to their ethically controversial isolation that requires