Reflections of an Ebola vaccine trial participant

I’m a social scientist based for the last twenty years in Kilifi, on the Kenyan Coast. Much of my work over my time here has focused on how researchers interact with communities, and on the priorities, experiences and concerns of research participants. So when the chance finally came for me to be involved in a Phase 1 trial myself, I leapt at the opportunity. I was keen to see what it felt like first hand to go through the entire process, from attending the initial community information giving sessions, to the consent processes, the various procedures, and then hearing what was learned at the end.

So exactly one month into the trial, what have I learned so far? Well, overall, I am thinking about how similar I have been to so many of the local residents I have interviewed over the years. What do I mean by that when I’m obviously so much more privileged financially, and have so much more exposure to formal science education in my work, family and social life? To explain I have to make a few confessions:

Why did I join the trial? Well there was certainly an element of me being keen to play a tiny part in alleviating the tragic effects of Ebola. But even that altruistic feeling comes with a sense of personal satisfaction (so how altruistic is that really?), and I also realised that by participating I am somehow justifying to myself my own research with others (ie not altruistic at all).
How much did I really understand the trial before deciding to join? I thought I understood a lot of what was said in the excellently run community information session, but I cannot recall much. What I can remember was that those who had been in the trial so far had not had dramatic side effects, only little things that didn’t sound much of a big deal. I would no way have passed a knowledge test at that point.
Did I read the consent form line by line though? Well I was given a consent form - and the entire protocol on my request – to go through in my own time. But I got busy and just skim read it. I did send it all on to my dad – who happens to chair several vaccine trial data safety and monitoring boards – and asked him if there was any reason not to participate. He couldn’t see one, so that was my final decision made (surely he wouldn’t let me join something that might finish me off?!) I only went through the consent form line by line when the lovely trial investigator saw that I had not picked up on key points; basically I was embarrassed into it.
Have I been a ‘good participant?’. There’s not much to do as a good participant, but turn up to appointments, and report any side effects. As it happens I think I’m the only person in Kilifi who has had an interesting side effect – a swollen knee 10 days post vaccine, lasting 10 days or so. But it took me two days to remember I was in the trial and realise it might be linked. Even then I first made an informal phone call to an investigator and said ‘look I don’t really want to mess up your data or anything so do you reckon I should mention this?’ The heavy sigh said it all (‘look woman, you are in a trial, you must report every single thing as soon as you sense it!’).
There are many more examples and of course everybody is different, but overall I’m struck by how much – as is common in Kilifi and in many other settings – my participation is based on trust in the researchers and in the trial they are leading, and is motivated by many different things (with altruism only a tiny part). I consulted with significant others to help me make the decision, with my own knowledge of the science frankly pretty dismal, and overall I’m enjoying maintaining and building social relationships with trial staff and other participants. So would I recommend participating in studies like this… yeaahhh, go for it (not least because the compensation for so many visits adds up to rather a nice grand total of 200 quid... not enough to entice me to join against my will, but not a bad little present for something I’d have been keen to do anyway!).

Sassy Molyneux is part of the steering committee for Research in Gender and Ethics (RinGs): Building Stronger Health Systems. She is employed by Oxford University and has been working as part of the KEMRI-Wellcome Trust Research Programme in Kilifi, Kenya, since 1994.