{"id":33541,"date":"2011-02-21T00:00:00","date_gmt":"2011-02-21T00:00:00","guid":{"rendered":"https:\/\/www.observa.it\/the-emerging-politics-of-human-genetic-technologies\/"},"modified":"2024-05-07T09:41:03","modified_gmt":"2024-05-07T09:41:03","slug":"the-emerging-politics-of-human-genetic-technologies","status":"publish","type":"post","link":"https:\/\/www.observa.it\/en\/the-emerging-politics-of-human-genetic-technologies\/","title":{"rendered":"The Emerging Politics of Human Genetic Technologies"},"content":{"rendered":"

\"\"<\/a>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 \u2018framed\u2019 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 \u2018saviour siblings\u2019 and the police DNA database; and less well known narratives such as feminist opposition to the use of women\u2019s eggs for stem cell research. The research methodology was ethnographic, consisting of in depth interviews with \u2018prime movers\u2019 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 \u2018the general public\u2019 in different contexts such as public talk on BBC website chat boards about saviour siblings.<\/p>\n

Defining \u2018public engagement\u2019<\/span><\/p>\n

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\u2019 juries, public consultations; and public engagement as \u2018social movement\u2019. Public engagement as \u2018social movement\u2019 is defined here as grassroots, self initiated forms of mobilisation including protest activity and<\/em> 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 \u2018social movement\u2019 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\u2019 as well as \u2018usual suspects\u2019 such as patient groups and pro-life groups. Thus understanding public engagement as \u2018social movement\u2019 also informed a specific methodological approach; an eclectic ethnography.<\/p>\n

\u2018Framing\u2019 the debates<\/span><\/p>\n

The research gathered many examples of how debates are \u2018framed\u2019 (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 \u2018the science\u2019 in isolation but to these initial framings of \u2018the science\u2019 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 \u2018tilt the frame\u2019:<\/p>\n

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\u2026 being determined and you\u2019re just responding back because you cannot discuss therefore what is outside the framework<\/em><\/p>\n

(\u2018Lucy\u2019, sustainable development watchdog spokesperson, interview 2005)<\/p>\n

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 \u2018either\/or\u2019 debates is particularly significant, as an important research finding was that complexity and ambivalence are embedded in many different public narratives; for example even \u2018pro research\u2019 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\u2019s eggs for stem cell research, in terms of the ethics of \u2018informed consent\u2019 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 \u2018informed consent\u2019 to the specific procedure.<\/p>\n

Related to this notion of \u2018scaling out\u2019 to locate (bioethical, \u2018scientific\u2019) issues in a broader context, is that the issues at stake are not simply about \u2018the science itself\u2019 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\u2019 narratives (of hope or risk, for example) are framed in relation to how they understand \u2018the science\u2019 (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 \u2018scientific citizens\u2019, 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 \u2018about human genetics\u2019 are in fact really \u2018about\u2019 these other, broader issues, then its not necessarily \u2018the science\u2019 that one needs to be expert in, lay or otherwise, to engage in the debates. As \u2018Peter\u2019, a patient charity spokesperson, makes clear when he says:<\/p>\n

a very senior scientist<\/em> [was saying] that we would be designing babies in the future\u2026 it was a social prediction\u2026 I\u2019m not convinced that those scientists have the expertise to make such social predictions<\/em><\/p>\n

(\u2018Peter\u2019, patient group advocate, interview 2004)<\/p>\n

Hybrid Science and Hybrid Publics<\/span><\/p>\n

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. \u2018Human genetics\u2019 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 \u2018human genetics\u2019<\/p>\n

if you go ten, fifteen years in the future, you\u2019re not going to be able to distinguish between what\u2019s nano technology, what\u2019s bio technology, what\u2019s information technology or what\u2019s genetic engineering. They\u2019re all going to be the same kind of technologies \u2026 just employed in different ways and different places.<\/em><\/p>\n

(\u2018Mike\u2019, UK\/international technology watchdog , interview 2004)<\/p>\n

Human genetics is thus \u2018techno-science\u2019, a \u2018hybrid\u2019 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 \u2018human genetics\u2019 technique or application, it is closely linked; for example, the use of genetic techniques to screen and then discard specific embryos carrying a \u201cfaulty gene\u201d, 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 \u2018hybrid\u2019 publics; for example, a campaign group \u2018Hands Off Our Ovaries!\u2019 was set up to oppose the use of women\u2019s 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.<\/p>\n

Dr Alexandra Plows<\/strong> is a Research Fellow at the Wales Institute of Social and Economic Research, Data and Methods (WISERD). Her 2010 book \u201cDebating Human Genetics: Contemporary Issues in Public Policy and Ethics\u201d is published by Routledge.<\/em><\/p>\n

Bibliography<\/span><\/p>\n

\u2022 Callon, M. (2004). The role of hybrid communities and socio-technical arrangements in the participatory design. Participatory Design of Information<\/em>, 5 (3), 3-10.<\/p>\n

\u2022 Callon, M + Rahebarisoa, V Research \u201cin the wild\u201d and the shaping of new social identities Technology in Society<\/em> Volume 25, Issue 2, April 2003, Pages 193-204.<\/p>\n

\u2022 Goffman, E. (1974) Frame analysis: An essay on the organization of experience<\/em> New York: Harper & Row.<\/p>\n

\u2022 Irwin, A. & Michael, M. (2003) Science, Theory and Public Knowledge<\/em> Maidenhead: Open University Press.<\/p>\n

\u2022 Latour, B. (1993) We Have Never Been Modern<\/em> Cambridge: Harvard University Press.<\/p>\n

\u2022 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<\/em> New Haven: Yale University Press.<\/p>\n","protected":false},"excerpt":{"rendered":"

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 \u2018framed\u2019 the debating stakes. Focusing on some specific public groups, the research provided a…<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[475],"tags":[],"class_list":["post-33541","post","type-post","status-publish","format-standard","hentry","category-news","category-475","description-off"],"yoast_head":"\nThe Emerging Politics of Human Genetic Technologies - Observa Science in Society<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.observa.it\/en\/the-emerging-politics-of-human-genetic-technologies\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"The Emerging Politics of Human Genetic Technologies - Observa Science in Society\" \/>\n<meta property=\"og:description\" content=\"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 \u2018framed\u2019 the debating stakes. 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