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(Re)Constructing embryos in stem cell research: Exploring the meaning of embryos for fertility patients

Parry, S

Talking Biotechnology ... Reflecting on Science in Society

Wellington, New Zealand

November 29 – December 2 2005

One of the key controversies in the stem cell research (SCR) debates concerns the use of human embryos. In the UK, human embryonic SCR and the creation of `cloned embryos' using somatic cell nuclear transfer are legally permitted under amendments to the 1990 Human Fertilisation and Embryology Act (HFE Act). These changes to the law were precipitated by two significant scientific developments, which in turn generated controversy in the public domain in the UK (and elsewhere). The first concerned the production of Dolly the cloned sheep in 1997 by a team of researchers at the Roslin Institute, Scotland (Campbell, McWhir, Ritchie & Wilmut, 1996). This was followed a year later by the development of the first embryonic stem cell line by James Thompson and colleagues at the University of Wisconsin, USA (Thompson, Itskovitz-Eldor, Shapiro, Waknitz, Swiergiel & Marshall et al., 1998).

In embedding the policymaking process relating to SCR in amendments to the existing regulations for embryo research (the aforementioned HFE Act), the SCR debates have tended to be highly polarised - especially around the `embryo question'. As with the UK's embryo debates during the 1980's (see, Franklin 1999; Mulkay 1994, 1997; Spallone, 1986), there remains little consensus on the meaning of embryos and established positions have become further entrenched (see Parry 2003). The stem cell debates have reinvigorated the `pro-life' movement who have concerned themselves with the rights and status of the embryo as a human life. Advocates of this position argue that eSCR further commodifies and violates the sanctity of life, and call into question the drawing of a distinction between embryos and foetuses (see Parry 2003). Whilst the line at which an embryo becomes a human life remains as arbitrary as ever (see Spallone, 1986), those in favour of eSCR invoke scientific `evidence-based' means for demonstrating the difference between an early embryo and a foetus. For instance, stem cell scientists use pictures to illustrate the visual likeness of embryos to a "collection of cells", which is routinely referred to using the technical term: blastocyst. This scientised account of embryos is reminiscent of the strategic coining of the term "pre-embryo" in the 1980's (Mulkay 1994, Spallone 1986) to deflect criticism away from the `embryo as life' argument. Yet, those in favour of eSCR simultaneously acknowledge the special status of the embryo. This contradiction is reconciled by foregrounding the potential therapies that may come from this research (see also Ganchoff, 2004) and, in the final instance, deploying a utility focussed argument that weighs the life of an adult living with an incurable disease with that of an embryo (see Parry 2003).

In the context of such a public controversy, it is important to explore the range of views on these developments and consider to what extent some voices are represented in public debates whilst others are marginalised. Despite the focus on using embryos for SCR, it is remarkable to note that there is scant discussion of the context or sources from which embryos are obtained: fertility patients enrolled in fertility programmes. Although the continuation of eSCR requires the ongoing support and cooperation of these potential embryo donors, their views of using embryos in SCR were overlooked in public debates that led to the amendments to the HFE Act or ongoing discussions since that time. References to fertility patients often involve invoking them through their embryos rather than discussing their involvement and views directly. Or patients are considered "public spirited" willing embryo donors. Additionally, these embryos are usually described as "spare" of "surplus to requirements". Thus, whilst the language of "spare" or "surplus" used in the SCR debates is compelling in shifting understandings of embryos from potential life to biological material used for medical research, how fertility patients feel about the use of embryos for SCR and what may lead them to agree of refuse to donate embryos remains unquestioned.

In this paper, then, I will focus on the views of those enrolled in fertility programmes who may be approached to donate their embryos for SCR. It is important to ask how some embryos come to be classified as "spare" or "surplus", and by whom? More importantly, what do people undergoing fertility treatment consider to be a "spare" embryo, and how does this influence what can be done with them? Based on focus group discussions with two fertility patient groups, I will explore `what matters' to these groups when considering the use of embryos in SCR. This paper arises from a three-year doctoral study of the debates surrounding SCR and human cloning. This included discourse analysis of the Parliamentary debates leading to the regulation of SCR in the UK and the corresponding media attention. Following on from this, I conducted focus groups and interviews with three groups: i) scientists working in the field of SCR and cloning, ii) patient groups who may become users of stem cell therapies, and iii) fertility patients who may be approached to donate embryos for SCR. This study had a total of 5 focus groups and 7 interviews, involving 50 participants.

Ordered into four thematic categories, I will examine excerpts from focus groups that capture key issues addressed within the group. First, I focus on patients' views of what constitutes a "spare" embryo is discussed. Second, I explore understandings of the types of research that patients believe embryos should be use for, and assumptions made about the nature of embryo research. Third, I attend to views of embryos as potential life and the implications of this for donating to SCR. Fourth, I widen the discussion to include the importance of patients' views of the wider implications of SCR. Drawing on previous research from science and technology studies - especially that of scholars with an interest in gender - I move on to provide a sociologically informed analysis of fertility patients views of human embryonic SCR. Here I highlight the role of grading systems in the clinic for classifying embryos in different ways. The significance of the expert mediated knowledge is then discussed, drawing attention to doctor-patient relations in the fertility clinic and the potential for coercion. In particular, I bring to the fore the sense of powerlessness experienced by participants who felt they had little means of power for influencing the topic and content of scientific research. Finally, I explore how SCR further disrupts the teleology of embryos and undermines the narrative of life that suffuses the hopes and expectations of people undergoing fertility treatment. Throughout, I illustrate how people come to make particular decisions and what factors shape this; showing that fertility patients' views are context-bound, borne out of lived experiences both within the clinic and wider society. To conclude, I discuss the implications of these findings for critically engaging with questions about the ongoing use of embryos in SCR.

References

Campbell, K. H. S., McWhir, J., Ritchie, W. A., & Wilmut, I. (1996). Sheep cloned by nuclear transfer from a cultured cell line. Nature, 380, 64-66.

Franklin, S. (1999). Making representations: The parliamentary debate on the Human Fertilisation and Embryology Act. In J. Edwards, et al. (Eds.), Technologies of procreation: Kinship in the age of assisted conception (2nd Ed.). London: Routledge.

Ganchoff, C. (2004). Regenerative movements: Embryonic stem cells and the politics of potentiality. Sociology of health and Illness, 26(6), 757-774.

Mulkay, M. (1994). The triumph of the pre-embryo: Interpretations of the human embryo in parliamentary debate over embryo research. Social Studies of Science, 24, 611-639.

Mulkay, M. (1997). The Embryo Research Debate: Science and the Politics of Reproduction. Cambridge: Cambridge University Press.

Parry, S. (2003). The politics of cloning: Mapping the rhetorical convergence of embryos and stem cells in parliamentary debates. New Genetics & Society, 22(2), 177-200.

Spallone, P. (1986). The Warnock report: The politics of reproductive technology'. Women's Studies International Forum, 9(5), 543-550.

Thompson, J. A., Itskovitz-Eldor, J., Shapiro, S. S., Waknitz, M. A., Swiergiel, J. J., Marshall, V. S. & Jones, J. M., (1998). Embryonic stem cell lines derived from human blastocysts. Science, 282(5391), 1145-1147.