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The regulation of the use of biomaterials through property rights: Exploring the tensions between biobanks' and donors' rights

Gulbul, Rebecca Hanna Bibi (2023) The regulation of the use of biomaterials through property rights: Exploring the tensions between biobanks' and donors' rights. Doctor of Philosophy (PhD) thesis, University of Kent,. (doi:10.22024/UniKent/01.02.105512) (Access to this publication is currently restricted. You may be able to access a copy if URLs are provided) (KAR id:105512)

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https://doi.org/10.22024/UniKent/01.02.105512

Abstract

The thesis argues that the legal framework regulating the use of biomaterials benefits biobanks by enabling them to pursue commercial activities, while insufficiently recognising the interests of donors in their material. As research biobanks increase their emphasis on for-profit activities, these tensions are growing. In several instances, donors and patient groups have sought more control over the research process, and to claim different sets of rights over their donated materials.

The law regulates biomaterials by focusing on their property status at different stages of an imagined single linear journey. The no-property rule, the altruistic tissue donation framework, and the biobanks' use of consent forms all assume that donors have no interests in their body or their material. Meanwhile, biobanks can acquire property rights over the material, enabling them to engage in a range of activities including research, which furthers commercial interests. As a result of donors' lack of recognised property rights, they are unable to have any input in the way that their material is used or to participate in the outcome of research carried out on it.

The thesis relies on theories of temporality, elements of Actor-Network Theory, such as translation and materiality, and the sociology of expectations to explore the interests and relationships at play in the bioeconomy. Biobanks enrol different actors in their network by projecting future expectations, while donors' claims illustrate the permanence of the past in the present, disrupting the temporal assumptions embedded in the law. Since the success of a biobank relies on maintaining relationships with the actors in its network, the dismissal of donors' continued interests, alongside an over-emphasis of commercial interests, may erode donors' trust, and result in their unwillingness to continue to participate.

The thesis examines the tensions at play in the regulation of donated biomaterial, and interrogates how legal relationships, particularly property rights, may be rethought to acknowledge some of the interests currently unrecognised by the legal framework regulating the use of biomaterials.

Item Type: Thesis (Doctor of Philosophy (PhD))
Thesis advisor: Cloatre, Emilie
Thesis advisor: Haslam, Emily
DOI/Identification number: 10.22024/UniKent/01.02.105512
Uncontrolled keywords: biobank; biobanks; biomaterials; tissue donation; tissue donor; donors; biomedical research; genetic research; Henrietta lacks; property rights; temporality; actor-network theory; materiality; law and time; altruism; gift; commodification; trust; value; citizen science; benefit-sharing; solidarity
Subjects: K Law
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > Kent Law School
SWORD Depositor: System Moodle
Depositing User: System Moodle
Date Deposited: 02 Apr 2024 10:10 UTC
Last Modified: 03 Apr 2024 14:51 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/105512 (The current URI for this page, for reference purposes)

University of Kent Author Information

Gulbul, Rebecca Hanna Bibi.

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