The Democratic, Anti-Racist Genome? Technoscience at the Limits of Liberalism

Abstract

The opening decade of this millennium witnessed genome scientists, policy makers, critical race theorists and world leaders standing together to pronounce the antiracist democratic potential of human genomics. Understanding and assessing this rise of 'anti-racist, democratic genomics' requires distinguishing between two problems of power and science: the first characterized by what Michel Foucault labeled states of domination; the second by what he described as relations of power. When states of domination exist, as in the case of Nazi science, liberal efforts to extend new powers of participation and autonomy to research subjects may play important roles in redressing power imbalances between researchers and their subjects. However, when distinctions between scientist and research subject blur, as in the case of much human genomics, efforts to extend liberal rights to subjects of genomic studies-or genomic liberalism-may produce novel problems, including: (1) human genome scientists' loss of capacity to describe their objects of study; (2) disruption of research subjects' abilities to define themselves; and (3) lack of accountability for the unintended effects of efforts to democratize genomics. In these ways genomic liberalism may foster, at the same that it impedes, the co-constitution of knowledge and democratic subjects. It may create new forms of racism at the very moment that it explicitly seeks anti-racist ends. Addressing the problems created by this paradoxical position will require more sustained attention to and critique of the antiracist and democratic imaginaries that increasingly animate technoscience.

Publics of Bioscience

“…Perhaps, more fundamentally, questions have been raised about whether there has actually been a substantive engagement with engagement or, more importantly, with publics (see Welsh and Wynne, 2013). Furthermore, as Reardon's (2012) study of the HapMap and other initiatives in genomics involving particular publics demonstrates, it is far from clear whether the power relations of the biosciences, both institutional and epistemological, have been touched by engagement enthusiasm and initiatives. 6 The imperative to prioritise efforts to facilitate scientific progress still seems pervasive and when public engagement encroaches on this domain, advocacy for it can and has waned.…”

“…5 On expectations for the HGP, see, for example, Collins and McKusick (2001). 6 For a very interesting exploration of some specific forms of public participation in genomic programmes, see Reardon (2012).…”

A New Research Agenda for the Study of Genetic Ancestry Tests and the Formation of Racial and Ethnic Identities and Ancestries

“…This sociological and anthropological work highlights the limits of anti-racism and liberal democratic discourses and practices superficially embedded within the science that claims to challenge biological conceptions of race and thereby to challenge racism. For example, in her work on US media representations of genetic tests, Reardon (2012) points to some of the ways in which these tests are seen to 'individualise' (and perhaps indeed making it something one selects from the identities supermarket) race within American society and thus unintentionally enable white people to mobilise mixed-race ancestries to potentially get resources that are otherwise reserved for ethnic minorities who experience systematic racial discrimination within American society.…”

“…This observation points us in the direction of a further strand of work by sociologists and anthropologists that examines representations of whiteness and genetic ancestry testing in the American media as well as the US-based Genographic Project. The latter is a world-wide research project that deploys genetic ancestry testing to map humanity's shared origins (see for example, (Reardon 2012;Reardon and Tallbear 2012)). This sociological and anthropological work highlights the limits of anti-racism and liberal democratic discourses and practices superficially embedded within the science that claims to challenge biological conceptions of race and thereby to challenge racism.…”

Genomics and genetic medicine: pathways to global health?

“…'Genomics for the World' was the headline of an article in Nature Genetics in 2011, where calls were made to widen the scope of genomics to include a greater diversity, to encompass 'minority populations' from 'other ethnic groups', and to ensure that 'those most in need' are 'not the last to receive the benefits of genetic research' (Bustamante, Burchard, andDe La Vega 2011, see also Popejay andFullerton 2016). The way a discourse of 'humanitarianism' is being foregrounded in relation to efforts to ensure those in the 'global south' are given the 'right' to become participants in and potential beneficiaries of genomic research demands critical and engaged attention (Fullwiley and Gibbon forthcoming;Reardon 2012). Yet, in this moment of global expansion and ethical repositioning of genetic medicine and genomic technologies in terms of social inclusion and justice, the reality of inequitable and stratified access and rights to health care resources is also becoming apparent.…”