Gay and Bisexual Men’s Perceptions of the Donation and Use of Human Biological Samples for Research: A Qualitative Study

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.

Understandings of Participation in Behavioural Research: A Qualitative Study of Gay and Bisexual Men in Scotland

“…Indeed, most men viewed the relatively unobtrusive act of providing a saliva swab for HIV testing as a crucial part of the research and not a means of HIV testing. However, perhaps if they had provided a blood sample their expectations of feedback would have been more complex [ 43 ]. While ethical considerations continue to shape the design and development of studies, this study suggests that where participants’ understanding is well-developed and their consent informed by broader knowledge around the subject and purpose of research individual feedback on results may not always be necessary, particularly where testing is widely and freely available elsewhere.…”

The Experiences of Sexual and Gender Minority Participants With a Remote Biospecimen Collection Protocol

“…This illustrates that problems in infrastructure may propagate SGM invisibility and underrepresentation in biospecimen studies. There is almost no literature documenting best practices and recruitment strategies for biospecimen studies among SGM populations; existing studies are largely limited to predominantly cisgender sexual minority men and are primarily concerned with perceptions and attitudes prior to donation 14,15…”