Workshop 3: Brian Balmer and Norma Morris, 'Who is the 'guinea-pig' in human experimentation?'
Brian Balmer and Norma Morris (Science and Technology Studies, UCL) discussed their empirical work and its relevance to the theme of Experimental Subjects drawing on a nine-year collaborative research project on how volunteers understand their participation in biomedical research. Their research has involved interviewing women who have volunteered for a test scan using a new medical imaging technology about their experience of being a volunteer. They discussed three ways of understanding the 'experimental subject' that they have encountered in their research. First, they argued that the healthy and patient volunteers themselves are the experimental subjects being experimented on by biophysicists, and then being interviewed by social scientists. Next, they claimed that another type of 'experimental subject' emerges from their relationship with the biophysicists and they discussed the ambiguity around this relationship as either collaborators with the biophysicists or social scientific experimenters on the biophysicists. Thirdly, they reflexively made themselves into 'experimental subjects' and discussed how the biophysicists and volunteers constructed their identity in the course of their interactions.
Brian Balmer opened the presentation by investigating what happens when you as an experimentator want to experiment with experiments. He proposed that experimental subjects can be understood in the following ways:
Take 1: the standard view – patients and healthy volunteers as the subjects of human experimentation
Take 2: research scientist as experimental subject (of social scientists, or through practice of self-experimentation)
Take 3: reflexive social scientists observing themselves acting and acted upon by others.
Consequently, Balmer developed on possible arising issues such as how far these actors accept the prescribed role of experimental subject (multiple performances of identity), how widely to define ‘experimentation’ (eg “observation = intervention”?) and how well the research regulatory system copes with non-standard situations (i.e. relationship to animal experimentation).
Further, Brian Balmer describes the background of the research in STS Department. Here, he emphasised in particular the focus on the biomedical volunteer’s experience in terms of:
- what participation means to them
- how or if their input contributes to outcomes
- how they relate to researchers
- how they relate to health technology.
Thereafter Balmer claimed that the project aims to understand the internal dynamics of such human experimentation to help inform policy and practice, both locally and more widely. Next, Balmer presented main project description and methods: women volunteers (patients and healthy) undergo a painless test scan of the breast on a prototype optical imaging system, they get no medical benefit (do get £40), 80 volunteers interviewed (15 in USA) and 10 researchers -including our collaborators.
Consequently, Brian Balmer described the research setting – university physics laboratory where breast patients and healthy volunteers act as test subjects for a new method of breast imaging using light waves (not X-rays). Here, he pointed out three things that should be noted about the setting:
(1) The people interacting with the volunteers are medical physics researchers – not collaborating medics
(2) Setting the encounter in a working physics lab rather than a hospital emphasises that patients/Hvs are part of an experiment
(3) Light waves (optical wavelengths) unlike x-rays do not cause harmful radiation; participants derive no personal medical benefit.
Further, Balmer referred to the project’s methodology in order to compare this study more to experiment rather than treatment. He argued that social science researchers from a Science and Technology Studies Department worked in collaboration with a team of medical physicists/engineers who ran clinical tests of a prototype instrument for optical imaging of the breast. Balmer pointed out that healthy volunteers were drawn from personal and work-based networks, while patient-volunteers were drawn from patients attending a local breast clinic. Further, he explained that volunteers were invited to come to the laboratory to undergo an experimental scan of the breast: they derived no medical benefits from the scans, but received a small honorarium. Balmer claimed that the social scientists acted as participant-observers at scan sessions and interviewed volunteers; met regularly with the physicists to discuss findings; and also interviewed the physicists to establish their views on interactions with volunteers. Therefore, Balmer argued that the physicists were both 'researchers' and 'research subjects' for purposes of the analysis of talk taking place during the scan. The data Balmer and Morris reported on were gathered via audio recordings of scans, supplemented by field notes, and transcripts of volunteers’ interviews.
Balmer explained that during the period 2002-2007, they interviewed 65 women in the UK and observed a further 5: 18 of these were scanned using an upright 'frame' design of patient interface and 52 using a redesigned 'bed' interface on which the patient lies prone. Twelve of the women were healthy volunteers, and of the remainder there were roughly equal numbers of women with cancer and those with non-cancerous breast conditions. The US interviews took place in 2007 and out of the 15 women interviewed the majority included healthy volunteers, women with suspect masses, and women with cancer.
Concomitantly, Norma Morris developed on the notion of volunteer human subjects, drawing on the classic picture of volunteer as an experimental subject, arguing that the patient-volunteers and healthy volunteers are the experimental subjects and that the biomedical researchers do the experimentation (but once social scientist comes on the scene s/he intervenes).
Morris also spoke of the so-called Third Party, explaining that in their project they as social scientists intervened in this diadic researcher-subject relationship. She argued that they both observed scans and separately interviewed the volunteers, thus adding another experimental layer. Morris proposed that this disturbs the neat dichotomy but so do other factors. Here, Morris claimed that social scientists and their recording equipment intervene in:
(1) observation (and for some of the scans, recording) of the biomedical experiment
(2) their own bolt-on experiment (i.e. the interview), to provide a reconstruction of how the volunteer experienced the previous experiment.
Consequently, Morris argued that there is no simple dichotomy and the following strategies to resolve social and professional anxieties need to be considered:
(1) [Using their study as example] For the volunteers the challenge is mainly social - not physical risk/benefit or discomfort (but special conditions applying: no-risk no-pain, non-therapeutic)
(2) For researchers challenge seen more as professional (do right and get results)
(3) Both volunteers and researchers develop strategies (Morris & Balmer 2006; Morris et al, 2009) to construct a good working relationship (Goffman 1959) to meet these goals and anxieties.
Here, Morris stated that they do have to emphasise special characteristics of their research situation: it is a face-to face encounter which requires some undressing as it takes place in a laboratory which is an unfamiliar setting for some volunteers. Further, Morris argued that they found some similarities in the experience of volunteers and the experience of researchers – both have anxieties about playing their role with dignity and effectiveness, and both have to work together to create a working relationship to deal with this. Hence, she explained that they used Goffman’s idea of the ‘working relationship’ in this context - a cooperative effort, necessary in social interactions, so that each party can perform their role satisfactorily without loss of face.
Next, Morris explained how from the volunteers point of view taking part in an experiment is a social situation, and an uneasy one because: it takes place in unfamiliar surroundings, it involves new and unfamiliar tasks to perform, it produces embarrassment about ‘taking your kit off’, it incorporates not recognised social conventions (Goffman) and it induces a possible stigma of being a guinea pig. In the case of researchers, the focus in on: getting good quality, usable data, finding ways to win volunteers’ trust and cooperation to this end, being professional, demonstrating competence and involving anxieties about quality of their own performance in dealings with volunteers. Next, Morris gave a more detailed analysis of the relationship between volunteers and the guinea pig role, as well as explaining the tensions with ethical framing of human experimentation and patient/volunteer role.
Following, Morris presented a second approach to experimental subjects: biomedical scientists as guinea-pigs. Here, she explained arising from role drift in medical science/ social science collaborations (in their case) as well as situations where social scientists identify technoscientific or medical research as a site for field work. Morris explained how in their study they started off as collaboration but there were times that it appeared as their work was to investigate their social collaborators. Concomitantly, she elaborated on the relationship between collaborators and research subjects, emphasising the issues around institutionalising this dual relationship.
Here, Morris gave a particular focus to the fluidity and ambiguity of roles in terms of:
(1) Researchers hybridising subject and collaborator roles
(2) Self-experimentation: well established tradition (Altman, 1987)
(3) Colleagues and collaborators undergoing the experimental procedure
(4) Research subjects introducing variations or taking on aspects of researcher role.
Here, Brian Balmer took over and referred to the third conceptualization of the experimental subject as the Social Scientist, asking how do we perform our identity as ‘social scientists’. He argued that one cannot avoid being reflexive (either that, or need to have another bunch of meta-social scientists observing them, then a further bunch observing the observers and so on…) and one route into this is to try and understand some of the ways in which their collaborators and volunteers made sense of who they were and what they were doing - how do they construct their identity?
Balmer claimed that one way in which they participated in the construction of their own role with respect to the scientists, was to be ‘gift-givers’ (knowing they would not immediately be as interested as them in theorizing the subject-researcher relationship, they kept their initial feedback to quite practical ‘market research’ type of advice). Hence, comments such as ‘give the volunteers a cushion’, ‘don’t have them facing a wall’, ‘some would like music playing’, while hardly likely to shift paradigms within social science, meant that they made themselves useful to the biophysics team.
Next, Balmer briefly described volunteers’ construction of the social scientist pointing out no direct data, two separate research projects (collaborators but with bioscience as well as social science) and separate consent forms used for scan and interview.
Finally, Balmer and Morris spoke about emerging issues in human experimentation and the way that they saw three main types of experimental subjects, pointing to the issues for broader discussion:
(1) New arenas for volunteers’ participation –e.g. genetic databases, biobanks: blurring boundaries of research, donation, banking
(2) ‘Mandatory volunteerism’? Collective responsibilities outweigh individual consent?
(3) Effects of UK policies to streamline ethical approval and use trial recruitment rates as performance measures for NHS hospitals.
They concluded their presentation with a simple statement that it is fascinating to see what the volunteers think about social researchers.
Firstly, the issues of the understanding of being a good European citizen as one doing the best volunteering in this sort of research were considered. Here, Balmer and Morris argued that public policies advocating partnership and good citizenship require an active and thinking patient to come into tension with the older model of doctor-patient relationship informing ethics codes and practice.
Secondly, debate turned briefly onto the problem of the erosion of identity from a very early age due to the technological framing of society (i.e. children have their fingers scanned while taking books out of the library).
Thirdly, a cyclical nature of the way that things are brought to description was pointed out. Here, it was argued that these perpetually irresolvable critiques of ‘something’ are particularly problematic with regards to the issues of authorship and negativity. Further, political representation was questioned in this context. Here, Morris argued that she is not an activist but she just lays the issues concerning the changing areas on the table.
Further, observation and the question of whether in these experimental practices the participation is encouraged as a public good were discussed. Here, a particular focus was given to the question of from what position can one consider the voluntary position in this polis.
Next, the issues around STS and reflexivity were debated. It was argued that STS’s primary aim was the public whilst scientists expect the public to emerge to fit the pre-designed categories and social researchers expect public reflexivity to raise from the three described by Balmer and Morris categories.
Finally, a dimension of critical reflexivity was questioned in the work of Balmer and Morris. Here, it was pointed out that a steering group could be arranged (with stake holders represented) injecting a critical dimension into research. Further, it was argued that the third outlined approach regarding experimental subjects does not read as reflexivity in ethnography or anthropology (as keeping journal and sharing your notes). Consequently, a question was posed of why do Balmer and Morris agonize about reflexivity without going through the usual motions regarding it. Here, it was agreed that the logical way to do a peer revue is to take it back to the public but as ESRC does not fund this, the issue becomes problematic.