Changing the subject

Sixteen years ago I was either more of a methods geek than I am now, or I had a lot more free time. Whatever the reason, I decided to count through the abstracts of the previous year in the British Medical Journal to see how often the word ‘subject’ appeared.

My reasoning for this was the then standing advisory group on consumer involvement in NHS research had decreed the term ‘participants’ was preferable. Yet established journals were still using the outdated term ‘subject’.

I’ve no idea why I picked the BMJ for special attention, although I do recall they initially responded with a rejection of my letter before I replied (somewhat forcefully) with some rebuttals. And after this they not only published my letter but also changed their editorial policy away from subjects and towards participants.

You can read the whole exchange here with responses (and suggestions for additional terminologies) here.

In the first edition of The Research Companion I talked about alternatives we might use to ‘subject’ and for a while it seemed the term would be replaced across the social and health sciences. Not least because of ongoing pressure from patient groups and activists arguing for more transparency and inclusivity in research and challenging hierarchies between the researcher and the researched.

However, many journals continue to use the term ‘subjects’ in their editorial policy and it’s a term that’s still often taught across methods courses in the social and health sciences (particularly in experimental and biomedical programmes). Ethics Committees are still often prefixed by ‘human subjects’.

Reasons for continued use seem to be habit or tradition, a lack of critical reflection, unquestioningly maintaining research hierarchies, or a belief the terminology brings with it some level of objectivity or control to studies. Others simply argue the term is not pejorative and works well for them.

Why do I, and others, object to the term? There are numerous reasons but the main ones are it brings with it connotations of authoritarianism where people are passively ‘subjected’ to research. And that it creates unequal relationships where the researcher is in a powerful position where they decide what the ‘subject’ can or cannot do. All of which recollect abuses and bad practices in social or health research – past and present.

Real world research, of course, cannot often be so neatly controlled. Although simply changing a descriptor doesn’t automatically alter the researcher/researched relationship which some might argue is always unequal with the balance of power residing with the researcher and/or funders of any study. Critics claim you can airbrush the same old oppressive model of research practice with fancy terminology changes while still not doing anything to support or empower those within your studies. And that rather than simply swapping one term for another we should think carefully about the specifics of each piece of work we’re involved in to decide what terminology is the most appropriate.

When I teach this, I’m often asked ‘if I can’t use ‘subject’ what CAN I say?’ Some alternatives to the term that have been suggested include:

Participants
Respondents
Volunteers
Consumers
Guinea Pigs
Informants
Activists
People
Gender based descriptors (men, women, Trans)
Age based descriptors (seniors, teens, adults, children, babies)
Occupation based descriptors (teacher, carer, plumber)

Just as ‘subject’ brings with it a whole heap of baggage, so do all the terms listed above. Guinea Pigs, for example, may be a term that works when applied within a community (for example many participants in cancer or HIV trials have referred to themselves as Guinea Pigs). But becomes problematic if it’s the term used by researchers to refer to their participants.

Consumers was mooted as a popular alternative in the late 90s and early 00s yet brings with it commercial and capitalist undertones that may not suit much critical research nor adequately represent what’s going on in social or health studies. Is someone in a study a consumer or is the person who ends up using or benefiting from the study the consumer? Or is it someone else entirely?

Descriptors based on gender, age, occupation etc can work but may become confusing if there are overlaps between categories (e.g. an older woman who’s also a caregiver).

Plus there’s the additional challenge of who is using these terms and when? For example if you introduce a study with a call for ‘participants’ you may well get a different group of people coming forward than if you asked for ‘activists’. People may be put off by being called ‘subjects’ but might prefer ‘volunteers’ or ‘respondents’. However they may be more familiar with ‘subjects’ so understand this as a ‘science term’. You may use one set of terms to describe your work to those who’ll be taking part, and a different set of terms when describing what you did with said people to a wider audience.

I often ask in teaching on research practice who pilots the terms they use to describe those who’ll be taking part in their research. I’m usually met with a baffled silence. This isn’t something we’re encouraged to think about and yet it can be important both in terms of how we get people to feel like our research is something they can be part of – and as something we undertake ethically and in an empowering way.

Using English research terminology also can add a layer of confusion or complexity when working cross culturally or using different languages and research translation. Some of the terms listed above don’t make much sense to English speaking audiences but can be further misunderstood by those working with research translations.

I’d love to open this up for wider discussion. Here are some things I’d like to focus on:

What terminology do you favour – and why?
Are there any terms missing from the above list (and what do you think of those suggestions)?
What terms were you taught when studying research methods?
Have you experienced any issues translating these terms to non English speaking audiences?
What terms do you use that aren’t in English (and how do they translate back into English?)
Do you think changing terminologies also changes how you go about doing social/health research?

All thoughts welcome below. I’ll update this post with other papers addressing this issue as and when I find them.