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Relating to Participants: How Close Do Biobanks and Donors Really Want to Be?

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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.

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Notes

  1. While it tends to be assumed that participants will be most concerned about donating genetic material, in an account of one UK Biobank participants’ experiences, it was completing the questionnaire and physical measures that ‘impinge[d] more directly upon her sense of self’ [19].

  2. The figures given by the then Prime Minister, Gordon Brown, are critically analysed by Dr Helen Wallace in a letter to the House of Lords Constitution Committee—Surveillance: Citizens and the State 28th June 2008. http://www.publications.parliament.uk/pa/ld200809/ldselect/ldconst/18/8013007.htm.

  3. There are of course conditions for which genetic research is not supported by all those affected. Among the deaf community there has been some opposition to genetic registers and research [5, 7].

  4. UK Biobank participants are referred to as ‘people’ but attend a ‘participant’ research centre. http://www.ukbiobank.ac.uk/.

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  1. Department of Politics Philosophy and Religion, County South, Lancaster University, Lancaster, LA1 4YD, UK

    Mairi Levitt

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Levitt, M. Relating to Participants: How Close Do Biobanks and Donors Really Want to Be?. Health Care Anal 19, 220–230 (2011). https://doi.org/10.1007/s10728-011-0193-9

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