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The Immortal Life of Ethics? The Alienation of Body Tissue, Ethics and the Informed Consent Procedure Within Induced Pluripotent Stem Cell Research

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Bioethics Beyond Altruism

Abstract

In this chapter, we discuss the creation, in 2007, of induced pluripotent stem cells (iPSCs) as an ethical alternative to human embryonic stem cells . In so doing, we raise a series of questions around the social, ethical and legal issues associated with iPSC. Drawing on empirical research, we explore results from an in-depth study into participant motivations for donating tissue for the generation of patient-specific iPSCs, and discuss participant attitudes and understanding of ethical issues surrounding iPSC research. We suggest that current ethical and informed consent practices and guidelines are not adequate for emerging biotechnologies, such as iPSCs, and argue that new methods of communicating informed consent to research participants are required.

When people ask – I say, Yeah, that’s right, my mother [’s] name was Henrietta Lacks, she died in 1951, Johns Hopkins took her cells and them cells are still living today, still multiplying, still growin and spreadin if you don’t keep em frozen. Science calls her HeLa… But I always thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense. People got rich off my mother without us even knowin about them taking her cells, now we don’t get a dime.

Deborah, daughter of Henrietta Lacks (Skloot 2010: 9)

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Acknowledgements

This work was supported by grants from the National Health and Medical Research Council (NHMRC) Project Grant (1059369), the Bright Focus Foundation, Retina Australia, the Ophthalmic Research Institute of Australia and the Clifford Craig Medical Research Trust . Alex Hewitt is also funded by a NHMRC Fellowship. Alice Pébay is supported by an Australia Research Council Future Fellowship. This study was led by Alex Hewitt and Alice Pébay.

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Authors and Affiliations

  1. Monash University, Melbourne, Australia

    Casimir MacGregor & Tristan McCaughey

  2. University of Melbourne, Melbourne, Australia

    Megan Munsie & Alice Pébay

  3. Menzies Institute of Medical Research, University of Tasmania, Tasmania, Australia

    Alex Hewitt

Authors
  1. Casimir MacGregor
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  2. Tristan McCaughey
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  3. Megan Munsie
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  4. Alice Pébay
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  5. Alex Hewitt
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Correspondence to Casimir MacGregor .

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  1. Victoria University of Wellington, Wellington, New Zealand

    Rhonda M Shaw

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MacGregor, C., McCaughey, T., Munsie, M., Pébay, A., Hewitt, A. (2017). The Immortal Life of Ethics? The Alienation of Body Tissue, Ethics and the Informed Consent Procedure Within Induced Pluripotent Stem Cell Research. In: Shaw, R. (eds) Bioethics Beyond Altruism. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-55532-4_3

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  • DOI: https://doi.org/10.1007/978-3-319-55532-4_3

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