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Public health
Research
Public views on the donation and use of human biological samples in biomedical research: a mixed methods study
  1. Celine Lewis1,
  2. Margaret Clotworthy2,
  3. Shona Hilton3,
  4. Caroline Magee4,
  5. Mark J Robertson5,
  6. Lesley J Stubbins6,
  7. Julie Corfield7
  1. 1Unit 4D, Genetic Alliance UK, London, UK
  2. 2Human Focused Testing, Cambridge, UK
  3. 3CSO Social & Public Health Sciences Unit, Medical Research Council, Glasgow, UK
  4. 4Confederation of Cancer Biobanks, National Cancer Research Institute, London, UK
  5. 5Science Policy & Relations, AstraZeneca, Cheshire, UK
  6. 6GlaxoSmithKline Medicines Research Centre, Hertfordshire, UK
  7. 7BioCity, Areteva Ltd, Nottingham, UK
  1. Correspondence to Dr Celine Lewis; celine{at}geneticalliance.org.uk

Abstract

Objective A mixed methods study exploring the UK general public's willingness to donate human biosamples (HBSs) for biomedical research.

Setting Cross-sectional focus groups followed by an online survey.

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.

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.

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.

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.

  • PUBLIC HEALTH
  • GENETICS
  • PATHOLOGY

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/

https://doi.org/10.1136/bmjopen-2013-003056

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