The Emerging Politics of Human Genetic Technologies

Alexandra Plows

This project set out to provide a broad ethnographic overview of a rapidly emerging field; to identify the key issues which catalysed public engagement with human genetics during 2003-7, identifying who was mobilising, how they were mobilising, and why; how people ‘framed’ the debating stakes. Focusing on some specific public groups, the research provided a narrative of debates and debaters during this timeframe, as well as issues which broke as high profile media stories, with accruing public responses, such as ‘saviour siblings’ and the police DNA database; and less well known narratives such as feminist opposition to the use of women’s eggs for stem cell research. The research methodology was ethnographic, consisting of in depth interviews with ‘prime movers’ and participant observation in a range of social contexts; and was broadly UK based. There were two broad case study sites; a) patient groups and their advocates who were broadly supportive of human genetics research b) and genetic/technology watchdogs and loosely associated campaign groups who tend to frame human genetics issues in terms of social and environmental justice. Many other public groups were identified and loosely traced, including policy makers, scientists, industry, the media, and ‘the general public’ in different contexts such as public talk on BBC website chat boards about saviour siblings.

Defining ‘public engagement’

In identifying and understanding public engagement with human genetics, I differentiated between two typologies of public engagement, namely public engagement as a specific policy practice (including much associated academic endeavour), for example citizens’ juries, public consultations; and public engagement as ‘social movement’. Public engagement as ‘social movement’ is defined here as grassroots, self initiated forms of mobilisation including protest activity and engagement with policy: a series of networked relationships between many different sorts of publics, occurring in many different circumstances and taking many forms. This is usually catalysed by the emergence of a scientific issue as a policy topic, such as the availability of genetic screening. However ‘social movement’ public engagement takes its own forms, and does not necessarily engage with the policy process and those involved may in fact be hostile to policy- led engagement. This distinction enables a broader range of engaging publics to be identified as entering the debates on their own terms: from cyber Goths blogging about transhumanism and enhancement, to eco activists discussing the politics of technology’ as well as ‘usual suspects’ such as patient groups and pro-life groups. Thus understanding public engagement as ‘social movement’ also informed a specific methodological approach; an eclectic ethnography.

‘Framing’ the debates

The research gathered many examples of how debates are ‘framed’ (Goffman 1974, Snow and Benford 1992); including how debates are framed by powerful actors (science, industry, policy and the media), and in turn how these framings were responded to by other publics, particularly the two case study clusters. People respond not to ‘the science’ in isolation but to these initial framings of ‘the science’ as it emerges onto the public stage framed as a specific ethical problem, and/or as a specific policy issue. Some may respond by reiterating key frames of hopes for treatments and cures for serious disease, and mobilising accordingly- the narrative of many patient groups. Whilst others try to ‘tilt the frame’:

the point is not to put the gene in the centre; the point is to look at what is it to talk about social justice, and therefore what roles does any of the genetics play in it, we determine the framework first and then we see if you fit… rather than the framework… being determined and you’re just responding back because you cannot discuss therefore what is outside the framework

(‘Lucy’, sustainable development watchdog spokesperson, interview 2005)

Critiques of the governance of science and technology, and frustration with the very narrow and often adversarial framing of debates by policymakers in particular, was a common complaint for campaigners like Lucy. This critique of narrowly framed ‘either/or’ debates is particularly significant, as an important research finding was that complexity and ambivalence are embedded in many different public narratives; for example even ‘pro research’ patient groups activists could identify risks in specific contexts, and risks and benefits were often seen as tied together in most accounts. Others, like Lucy, tended to see an issue through a different lens to the dominant framing, often situating individualised bioethical issues (such as, to test or not to test) in a broader socioeconomic, socio-cultural, landscape. For example in 2006, the Human Fertilisation and Embryology Authority (HFEA) framed the issue of the derivation/sourcing and use of women’s eggs for stem cell research, in terms of the ethics of ‘informed consent’ of those participating in the process. In response, a loose network of UK and European feminists stated that egg sourcing needed addressing in the context of a gendered trade in bio-material, rather than simply through a narrow framing of ensuring ‘informed consent’ to the specific procedure.

Related to this notion of ‘scaling out’ to locate (bioethical, ‘scientific’) issues in a broader context, is that the issues at stake are not simply about ‘the science itself’ but the issues the science raises, such as health, identity, family, community, safety, human value and worth, distributory justice, access, democracy and citizenship, and so on. Thus peoples’ narratives (of hope or risk, for example) are framed in relation to how they understand ‘the science’ (in the form of an idea, or a specific application- such as a prenatal test) to potentially impact on these broader issues, and their own value frames relating to these broader issues. Thus while the research identified the lay expertise of what Irwin and Michael (2003) call ‘scientific citizens’, namely, those who have lay scientific knowledge, perhaps more importantly, it also identified that many people re-situate, or have different ideas about what expertise is relevant, and the nature of this expertise. In other words, if debates ‘about human genetics’ are in fact really ‘about’ these other, broader issues, then its not necessarily ‘the science’ that one needs to be expert in, lay or otherwise, to engage in the debates. As ‘Peter’, a patient charity spokesperson, makes clear when he says:

a very senior scientist [was saying] that we would be designing babies in the future… it was a social prediction… I’m not convinced that those scientists have the expertise to make such social predictions

(‘Peter’, patient group advocate, interview 2004)

Hybrid Science and Hybrid Publics

As Latour (1993) and Callon (2004, Callon + Rahebarisoa 2003) have shown, hybridity is a key characteristic of modern science, both in techno-scientific and techno-social terms. ‘Human genetics’ is not a specific thing; it is a diffuse and complex mixture of scientific and technological procedures and applications, which are shifting exceptionally rapidly as techno-scientific techniques develop and leapfrog over each other. In the period 2003-2007, Converging Technologies (Nano Bio Info Cogno) emerged as an important reality in relation to ‘human genetics’

if you go ten, fifteen years in the future, you’re not going to be able to distinguish between what’s nano technology, what’s bio technology, what’s information technology or what’s genetic engineering. They’re all going to be the same kind of technologies … just employed in different ways and different places.

(‘Mike’, UK/international technology watchdog , interview 2004)

Human genetics is thus ‘techno-science’, a ‘hybrid’ site where disciplines meld, and where research process and end product blur. For example, while the derivation and use of stem cells is not a precisely a ‘human genetics’ technique or application, it is closely linked; for example, the use of genetic techniques to screen and then discard specific embryos carrying a “faulty gene”, which can then become used in stem cell research. Such interdisciplinary, translational research is clearly hybrid in nature. The project identified many other examples of hybridity in action, such as the melding between public and private research (universities and industry), and the assemblages of civil society groups, policy makers and scientists forming new regulatory groups and structures. The earlier- discussed complexity and multiple issue-scaling relating to human genetics debates may be catalysing some exceptionally ‘hybrid’ publics; for example, a campaign group ‘Hands Off Our Ovaries!’ was set up to oppose the use of women’s eggs for stem cell research, initiated by some US feminists and UK pro life activists. Such hybridity is prefigurative of, catalyses, and further informs an understanding of social complexity in this still- emergent field. We will have to work harder at unearthing, and understanding, what such complex public responses signify for debates on human genetics and associated science.

Dr Alexandra Plows is a Research Fellow at the Wales Institute of Social and Economic Research, Data and Methods (WISERD). Her 2010 book “Debating Human Genetics: Contemporary Issues in Public Policy and Ethics” is published by Routledge.

Bibliography

• Callon, M. (2004). The role of hybrid communities and socio-technical arrangements in the participatory design. Participatory Design of Information, 5 (3), 3-10.

• Callon, M + Rahebarisoa, V Research “in the wild” and the shaping of new social identities Technology in Society Volume 25, Issue 2, April 2003, Pages 193-204.

• Goffman, E. (1974) Frame analysis: An essay on the organization of experience New York: Harper & Row.

• Irwin, A. & Michael, M. (2003) Science, Theory and Public Knowledge Maidenhead: Open University Press.

• Latour, B. (1993) We Have Never Been Modern Cambridge: Harvard University Press.

• Snow, D. and Benford, R. (1992) ‘Master Frames and cycles of Protest’ in Morris, A.D. and Mueller, C. (eds) Frontiers in Social Movement Theory New Haven: Yale University Press.

22 febbraio 2011 | in: Contributi, Ricerca,