Public views on the donation and use of human biological samples in biomedical research: a mixed methods study

Lewis, C., Clotworthy, M., Hilton, S. , MaGee, C., Robertson, M.J., Stubbins, L.J. and Corfield, J. (2013) Public views on the donation and use of human biological samples in biomedical research: a mixed methods study. BMJ Open, 3(8), e003056. (doi:10.1136/bmjopen-2013-003056)

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Abstract

Objective A mixed methods study exploring the UK general public's willingness to donate human biosamples (HBSs) for biomedical research.<p></p> Setting Cross-sectional focus groups followed by an online survey.<p></p> Participants Twelve focus groups (81 participants) selectively sampled to reflect a range of demographic groups; 1110 survey responders recruited through a stratified sampling method with quotas set on sex, age, geographical location, socioeconomic group and ethnicity.<p></p> Main outcome measures (1) Identify participants’ willingness to donate HBSs for biomedical research, (2) explore acceptability towards donating different types of HBSs in various settings and (3) explore preferences regarding use and access to HBSs.<p></p> Results 87% of survey participants thought donation of HBSs was important and 75% wanted to be asked to donate in general. Responders who self-reported having some or good knowledge of the medical research process were significantly more likely to want to donate (p<0.001). Reasons why focus group participants saw donation as important included: it was a good way of reciprocating for the medical treatment received; it was an important way of developing drugs and treatments; residual tissue would otherwise go to waste and they or their family members might benefit. The most controversial types of HBSs to donate included: brain post mortem (29% would donate), eyes post mortem (35%), embryos (44%), spare eggs (48%) and sperm (58%). Regarding the use of samples, there were concerns over animal research (34%), research conducted outside the UK (35%), and research conducted by pharmaceutical companies (56%), although education and discussion were found to alleviate such concerns.<p></p> Conclusions There is a high level of public support and willingness to donate HBSs for biomedical research. Underlying concerns exist regarding the use of certain types of HBSs and conditions under which they are used. Improved education and more controlled forms of consent for sensitive samples may mitigate such concerns.<p></p>

Item Type:Articles
Status:Published
Refereed:Yes
Glasgow Author(s) Enlighten ID:Hilton, Professor Shona
Authors: Lewis, C., Clotworthy, M., Hilton, S., MaGee, C., Robertson, M.J., Stubbins, L.J., and Corfield, J.
College/School:College of Medical Veterinary and Life Sciences > Institute of Health and Wellbeing > MRC/CSO SPHSU
Journal Name:BMJ Open
Publisher:BMJ Publishing Group
ISSN:2044-6055
ISSN (Online):2044-6055
Copyright Holders:Copyright © 2013 The Authors
First Published:First published in BMJ Open 3(8):e003056
Publisher Policy:Reproduced under a Creative Commons License

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