Are You Sitting Comfortably? Perspectives of the Researchers and the Researched on “Being Comfortable”

Abstract

In a study of volunteers in medical research we found contrasting readings of “being comfortable” by the volunteer research subjects and the researchers. Although the experimental process (testing a new kind of diagnostic technology) involved some physical discomfort—and the researchers focused on this—the volunteers’ concerns centred on feeling socially comfortable and managing feelings of embarrassment or isolation, and they generally made light of the physical aspects. The bias of volunteer concerns, which is understandable in terms of the different situations of researchers and volunteers and the different tensions they create, has potential implications for the engagement of researchers with their research subjects and prevailing standards for the ethical and accountable conduct of research.

Both authors contributed to all aspects of preparing this article.

The work was approved by the Joint UCH/UCL Research Ethics Committee.

Keywords:

• volunteers
• human experimentation
• clinical research
• research participants
• bioethics
• optical imaging

Acknowledgments

We are grateful to our medical physicist collaborators for their support and in particular to Professor J. C. Hebden for valuable comments and advice on our drafts. We acknowledge with thanks the support of the UK Economic and Social Research Council, who funded the work (Grant No: RES-000–22–0093).

Notes

Both authors contributed to all aspects of preparing this article.

The work was approved by the Joint UCH/UCL Research Ethics Committee.

¹We use the older terminology of “research subject” rather than the more acceptable current usage of “participant,” on the grounds that the status of the volunteer—whether subject, object, or participant—is one of the matters at issue during the research encounter, which the use of “participant” might seem to pre-judge.

² Werner et al., (2004) show how references to oneself as strong, in narratives about their illness by women with chronic pain (who often meet with scepticism about their condition) serve as part of a justifying argument, appealing to an audience that includes health professionals and the interviewer.

³Ie access (or chance of access) to an experimental treatment for an otherwise untreatable condition by entering a clinical trial; or access to free health care in societies where this is not universally available.

⁴As Mead claimed to be the norm in anthropology (Mead, 1969)

Tutton, R. (To appear). Constructing participation in genetic databases. Science, Technology, and Human Values.