Abstract

Human biological samples (biosamples) are increasingly important in diagnosing, treating and measuring the prevalence of illnesses. For the gay and bisexual population, biosample research is particularly important for measuring the prevalence of human immunodeficiency virus (HIV). By determining people’s understandings of, and attitudes towards, the donation and use of biosamples, researchers can design studies to maximise acceptability and participation. In this study we examine gay and bisexual men’s attitudes towards donating biosamples for HIV research. Semi-structured telephone interviews were conducted with 46 gay and bisexual men aged between 18 and 63 recruited in commercial gay scene venues in two Scottish cities. Interview transcripts were analysed thematically using the framework approach. Most men interviewed seemed to have given little prior consideration to the issues. Participants were largely supportive of donating tissue for medical research purposes, and often favourable towards samples being stored, reused and shared. Support was often conditional, with common concerns related to: informed consent; the protection of anonymity and confidentiality; the right to withdraw from research; and ownership of samples. Many participants were in favour of the storage and reuse of samples, but expressed concerns related to data security and potential misuse of samples, particularly by commercial organisations. The sensitivity of tissue collection varied between tissue types and collection contexts. Blood, urine, semen and bowel tissue were commonly identified as sensitive, and donating saliva and as unlikely to cause discomfort. To our knowledge, this is the first in-depth study of gay and bisexual men’s attitudes towards donating biosamples for HIV research. While most men in this study were supportive of donating tissue for research, some clear areas of concern were identified. We suggest that these minority concerns should be accounted for to develop inclusive, evidence-informed research protocols that balance collective benefits with individual concerns.

Highlights

  • As human biological samples, including tissues such as such as blood or saliva, are used for an increasingly wide variety of diagnostic, treatment and research purposes, the ethical and legal issues surrounding them are becoming more complex, and are subject to increased public interest [1]

  • Tissues collected in healthcare and research settings are increasingly archived in biobanks [2] for potential use in future studies

  • The Nuffield Council on Bioethics summarise the balance required: ‘On the one hand, there is the view that the use of human tissue clinically, and for medical research, leads to benefits in diagnosis and treatment, and should be encouraged

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Summary

Introduction

As human biological samples (biosamples), including tissues such as such as blood or saliva, are used for an increasingly wide variety of diagnostic, treatment and research purposes, the ethical and legal issues surrounding them are becoming more complex, and are subject to increased public interest [1]. Tissues collected in healthcare and research settings are increasingly archived in biobanks [2] for potential use in future studies. In 2005, the collection of anonymous oral fluid samples was added to the survey to complement the self-completion questionnaire. The saliva collected is tested for the presence of HIV antibodies to assess the prevalence of HIV, and linking samples with questionnaires allows for each participant’s actual HIV status to be compared with their self-reported HIV status. Participants are given information about accessing testing and counselling services

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