Group rights in biolaw: a model approach
dc.contributor.advisor
Laurie, Graeme
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dc.contributor.advisor
Mason, Ken
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dc.contributor.author
Kanellopoulou, Konstantina Nadja
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dc.date.accessioned
2012-05-17T15:17:40Z
dc.date.available
2012-05-17T15:17:40Z
dc.date.issued
2009-06-30
dc.description.abstract
This thesis investigates legal, ethical and social aspects of group participation in
genomic research. Groups in research are diverse. They can be families, patient
groups, native tribes, local communities, ethnic collectives or entire national
populations united by disease heredity, common cultural or personal ties. Despite
rapidly rising scientific and policy interest in research with groups, legal protections
for group rights and responsibilities are scarce.
This work discusses current problems in defining what constitutes groups, together
with dominant normative assumptions and ambiguities in existing research
protections. It focuses on key issues of representation, accountability, resourcesharing
and control in the management of scientific and commercial uses of group
research. It highlights the increasing value of groups as research partners and
examines emerging cooperative models, in the quest for appropriate legal
frameworks for group protections.
The thesis recommends a new concept of group empowerment and considers legal
models for the implementation of the empowerment principle in modern research
ethics. It proposes a way forward for law to focus on the collaborative aspects of
group-researcher relationships, and to identify group research gifts as conditional,
reciprocal returns of favours. Under the principle of group empowerment,
reciprocity and cooperation are central in the development of adequate mechanisms
for group protections. This new approach contributes to current thinking about ways
to redress inequities in the balance of power between groups and researchers, build
viable mechanisms for shared governance, and facilitate group involvement in
genomic endeavours.
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dc.identifier.uri
http://hdl.handle.net/1842/5951
dc.language.iso
en
dc.publisher
The University of Edinburgh
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dc.relation.hasversion
Kanellopoulou, N.K., ‘Gift or duty? A normative discussion for participation in human genetic databases research’ in Árnason, G., Nordal, S., Árnason, V. (eds), Blood and Data – Ethical, Legal and Social Aspects of Human Genetic Databases, University of Iceland Press, 2004, pp. 95-99
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dc.subject
groups
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dc.subject
genetic research
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dc.subject
bio-law
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dc.subject
bio-banking
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dc.subject
reciprocity
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dc.subject
empowerment
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dc.subject
consent
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dc.title
Group rights in biolaw: a model approach
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dc.type
Thesis or Dissertation
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dc.type.qualificationlevel
Doctoral
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dc.type.qualificationname
PhD Doctor of Philosophy
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