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4 - Constructing communal models of governance: collectives of individuals or distinct ethical loci?

Published online by Cambridge University Press:  02 February 2010

Heather Widdows
Affiliation:
University of Birmingham
Heather Widdows
Affiliation:
University of Birmingham
Caroline Mullen
Affiliation:
University of Leeds
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Summary

This chapter explores the recent move from individual models towards communal models of ethical governance. It draws on thinking about group rights to explore what conception of groups is necessary for an effective ethical framework. In particular it asks whether it is sufficient to regard groups as collectives of individuals – with their moral status and attendant rights dependent on the rights of individuals – or whether a more robust conception is necessary to establish the ethical protections required. Examining the nature of groups and group rights is crucial to issues of genetic governance, as whether or not one includes groups and the types of groups one includes fundamentally affects the framework of ethical decision making. It changes the key actors involved and the issues of ethical priority, thus in a very real sense it affects which ethical issues are recognised and frames how they will be addressed. For example, if groups do not feature in the ethical framework, then certain types of injustice are at worst invisible and at best parasitical (and secondary) to individual concerns. Accordingly, such conceptual concerns regarding groups and their rights speak directly to the practice and policy concerns of genetic governance addressed in this volume: from the structure of benefit-sharing and stakeholder models to political concerns regarding what counts as participation; to questions of ownership rights and decision making powers in genetic governance; to traditional bioethical concerns regarding what counts as harm in research. For in addressing all these issues, the ethical framework we use determines what we recognise as an ethical issue and what mechanisms are appropriate to address such issues.

Type
Chapter
Information
The Governance of Genetic Information
Who Decides?
, pp. 75 - 98
Publisher: Cambridge University Press
Print publication year: 2009

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