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:
Journal Article
Journal or Publication Title:
Health Care Analysis
Uncontrolled Keywords:
/dk/atira/pure/researchoutput/libraryofcongress/ra
Subjects:
ID Code:
51802
Deposited By:
Deposited On:
05 Dec 2011 09:41
Refereed?:
Yes
Published?:
Published
Last Modified:
17 Jun 2020 01:50