Debating Human Genetics: Contemporary Issues in Public Policy and Ethics

Debating Human Genetics: Contemporary Issues in Public Policy and Ethics

Debating Human Genetics: Contemporary Issues in Public Policy and Ethics

Debating Human Genetics: Contemporary Issues in Public Policy and Ethics

Synopsis

Debating Human Genetics is based on ethnographic research focusing primarily on the UK publics who are debating and engaging with human genetics, and related bio and techno-science. Drawing on recent interviews and data, collated in a range of public settings, it provides a unique overview of multiple publics as they 'frame' the stake of the debates in this emerging, complex and controversial arena.

The book outlines key sites and applications of human genetics that have sparked public interest, such as biobanks, stem cells, genetic screening and genomics. It also addresses the 'scientific contoversies' that have made considerable impact in the public sphere - the UK police DNA database, gene patenting, 'saviour siblings', and human cloning. By grounding the concepts and issues of human genetics in the real life narratives and actions of patient groups, genetic watchdogs, scientists, policy makers, and many other public groups, the book exemplifies how human genetics is a site where public knowledge and value claims converge and collide, and identifies the emergence of 'hybrid publics' who are engaging with this hybrid science.

Excerpt

This is a book about how and why different sorts of publics, predominantly in the UK, are debating, engaging with, human genetics and what they are saying and doing. Human genetics is impacting on the public sphere in many different settings, in specific contexts such as genetic testing, and is increasingly the catalyst for public engagement. People tend to construct – ‘frame’ – human genetics in terms of their existing personal points of view, their political and cultural frameworks, their ‘lifeworlds’ (Habermas 1987). They encounter human genetics as individuals, as members of different campaign groups and communities, through policy initiatives, through the media and so on. Drawing on project work during 2003–7, the book provides situated examples of how different publics in Britain are encountering and framing the debates on ‘human genetics’.

The theory of framing was first developed by Goffman (1974). A ‘frame’ is

an interpretive schemata that simplifies and condenses the ‘world out there’
by selectively punctuating and encoding objects, situations, events, experi
ences, and sequences of action within one’s present and past environment.

(Snow and Benford 1992: 137)

In other words, people, groups, networks and institutions develop ‘frames’ – ways of constructing the world – based on pre-existing values, and ways of doing things, and adapt these frames in a process of constructing meanings for things in the present moment; when faced with a specific issue, people will ‘frame’ it in their own way. For example, here is ‘Alice’ ‘framing’ human genetics:

if people feel they have to get to know all the science … then what’s going
to happen is people get bogged down in [it] … But … the issue isn’t the
science it’s the inequality … the humanitarian … issues.

(‘Alice’)

Frames are works in progress, constantly co-constructed. This book identifies and analyses how, why, where and when different social actors are . . .

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