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 1065-3058Full text not available from this repository.
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.
|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)|
|Deposited On:||05 Dec 2011 09:41|
|Last Modified:||26 Jul 2012 19:57|
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