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Relating to participants:how close do biobanks and donors really want to be?

Levitt, Mairi (2011) Relating to participants:how close do biobanks and donors really want to be? Health Care Analysis, 19 (3). pp. 220-230. ISSN 1065-3058

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Abstract

Modern biobanks typically rely on the public to freely donate genetic data, undergo physical measurements and tests, allow access to medical records and give other personal information by questionnaire or interview. Given the demands on participants it is not surprising that there has been extensive public consultation even before biobanks in the UK and elsewhere began to recruit. This paper considers the different ways in which biobanks have attempted to engage and appeal to their publics and the reaction of potential and actual donors. Whilst those organising biobanks presumably want to be as close to their publics as they need to be in order to successfully recruit and sustain participation in sufficient numbers, the closer the relationship the more obligations and expectations there are on both sides.

Item Type: Article
Journal or Publication Title: Health Care Analysis
Uncontrolled Keywords: public engagement ; uk biobank ; ALSPAC ; generation scotland
Subjects: R Medicine > RA Public aspects of medicine
Departments: Faculty of Arts & Social Sciences > Politics & International Relations (Merged into PPR 2010-08-01)
ID Code: 51802
Deposited By: ep_importer_pure
Deposited On: 05 Dec 2011 09:41
Refereed?: Yes
Published?: Published
Last Modified: 09 Apr 2014 22:55
Identification Number:
URI: http://eprints.lancs.ac.uk/id/eprint/51802

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