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

Research output: Contribution to Journal/Magazine › Journal article › peer-review

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Relating to participants: how close do biobanks and donors really want to be? / Levitt, Mairi.
In: Health Care Analysis, Vol. 19, No. 3, 2011, p. 220-230.

Research output: Contribution to Journal/Magazine › Journal article › peer-review

Harvard

Levitt, M 2011, 'Relating to participants: how close do biobanks and donors really want to be?', Health Care Analysis, vol. 19, no. 3, pp. 220-230. https://doi.org/10.1007/s10728-011-0193-9

APA

Levitt, M. (2011). Relating to participants: how close do biobanks and donors really want to be? Health Care Analysis, 19(3), 220-230. https://doi.org/10.1007/s10728-011-0193-9

Vancouver

Levitt M. Relating to participants: how close do biobanks and donors really want to be? Health Care Analysis. 2011;19(3):220-230. doi: 10.1007/s10728-011-0193-9

Author

Levitt, Mairi. / Relating to participants : how close do biobanks and donors really want to be?. In: Health Care Analysis. 2011 ; Vol. 19, No. 3. pp. 220-230.

Bibtex

@article{f8ad44f641db4e2c8eacb245c88e9759,
title = "Relating to participants: how close do biobanks and donors really want to be?",
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.",
keywords = "public engagement, uk biobank, ALSPAC, generation scotland",
author = "Mairi Levitt",
year = "2011",
doi = "10.1007/s10728-011-0193-9",
language = "English",
volume = "19",
pages = "220--230",
journal = "Health Care Analysis",
issn = "1065-3058",
publisher = "Springer Netherlands",
number = "3",

}

RIS

TY - JOUR

T1 - Relating to participants

T2 - how close do biobanks and donors really want to be?

AU - Levitt, Mairi

PY - 2011

Y1 - 2011

N2 - 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.

AB - 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.

KW - public engagement

KW - uk biobank

KW - ALSPAC

KW - generation scotland

U2 - 10.1007/s10728-011-0193-9

DO - 10.1007/s10728-011-0193-9

M3 - Journal article

VL - 19

SP - 220

EP - 230

JO - Health Care Analysis

JF - Health Care Analysis

SN - 1065-3058

IS - 3

ER -