Entomology, chemical ecology, evidence-based environmentalism and science in general. I like big bugs and I cannot lie.

Tuesday, 13 July 2010

11/7/10 - Consent

There's a bit of a perception among the general public* that scientists are a pretty immoral bunch, merrily stuffing haddock genes into turnips, feeding nail polish to kittens, cloning dead dictators and recklessly creating Earth-engulfing black holes for a laugh when there's nothing on telly. Obviously nothing could be further from the truth and I am definitely not breeding an army of mutant super flies with which to take over the world cough. But in all seriousness there's at least one area where medical science is ethically in advance of society in general, and that's the principle of consent.

For a scientific study to be approved by an ethics committee, anyone participating in the study in a way that carries any conceivable risk or inconvenience to them must give consent, which at its simplest means they must sign a form to say that they are willingly participating. But there's far more to it than that. The consent must be informed – people must understand the purpose of the study, how their samples or information will be used and the possible risks to them in participating, and it must be freely given – people must not be coerced into participating by an authority figure or for fear of loss of some benefits, and while they can be compensated for any inconvenience participation may cause them (for example having the cost of their transport to a hospital where samples can be taken paid for) they cannot be paid or given gifts for participating. Not paying participants is probably the most important, because it ensures that the study doesn't exploit those in the greatest financial need who might be tempted to take part in the study for the rewards rather than making a free choice to do so having weighed up the risks to themselves against the benefits to science.

I do wonder whether we'd be better off if the principles of consent could be applied to society at large, if people should not be offered money to submit to any procedure that carries a risk to them. Project Prevention, a deeply disturbing scheme being piloted in Glasgow in which drug addicts are offered money in exchange for getting sterilised, would certainly not be permitted if strict principles of consent were applied. And some interesting issues would arise if it were applied more widely – not permitting money to be given to someone in exchange for doing something which carries a risk to them would put an interesting spin on the perennial feminist debate on prostitution, and the practice of offering soldiers free university education in exchange for risking their lives and health in war would start to look extremely dubious.

So that's how consent should work in theory. The reality here on the ground in The Gambia is inevitably slightly different, as I discovered today when all five of the children in the compound where I usually collect human faeces to bait my fly traps with had diarrhoea. We had done the consent procedure in this compound by the book, with my fieldworker reading out a translation of the information sheet to the heads of the household, and while it is of course impossible for me to tell how accurate the translation into Mandinka is, both fieldworkers I've used are very reliable, and I've worked with this family for quite a while now and from the questions they've asked me they seem to have a fairly good idea of what I'm doing and why. Unfortunately with no, umm, material of a suitable quality available it was necessary to find an alternative compound within the next two hours, before it was time to replace the traps. "Do not worry!" proclaimed D my fieldworker. "God is great, we will prevail!" which I found a rather encouraging attitude towards the whole enterprise.

I had had an agonising choice of two possible fieldworkers, both equally qualified and equally desperate for work. Emotionally the balance lay rather in M's favour, as D had a job already but was eager for one that paid better than a government salary (I carefully explained that this work was temporary) whereas M was unemployed and was the nephew of a senior fieldworker so was probably the better political choice, but eventually I decided on D whose English was fractionally better. The choice has really paid off – in such a highly connected society personal relationships are so important and I was extremely lucky to discover that D used to live in Farafenni. D led me to the compound of a man he used to work with.

"But now he has been..." he paused "what do you call it when they sack someone when they get too old?"

I considered. "Discrimination?"

"No, the other thing."

I tried thinking laterally "Umm, retirement?"

"Exactly, exactly".

Sacked or not, D's former colleague seemed to have done rather well for himself and was apparently the landlord for the entire block of compounds, probably the equivalent of the village Alkalo or head man. D greeted him warmly and explained why we were here, then when his friend ducked into the house explained to me that all of the children in the compound had already been to the toilet except for one small girl who was still asleep. As he told me this the landlord reappeared carrying the girl in his arms, still blinking and fuzzy from sleep. He deposited her in front of me and whispered something to her, presumably explaining that this big scary white woman has come all the way from the UK and wants you to do a poo for her. The little girl did what any rational person would have done on being woken to be confronted with this information, and burst into tears. We waited a while in the compound, D catching up with his friend and me sitting in the one chair being eyeballed nervously by the little girl who had had the worst awakening ever, but with the deadline approaching and no poo forthcoming we decided to try another compound.

At this point things got a little complicated. The landlord was either so impressed by our study or so pleased to see D again that he decided to come with us, encouraging people to help out. How freely consent can be given when your landlord is encouraging you to participate is something I'm not sure about, but at this stage the issue was fairly academic as all of the children had already been to the toilet and, impressively, it had been hygienically disposed of in the latrines. At this point we had acquired quite a horde of hangers on: the landlord, a crowd of laughing women grateful for some respite from the monotony of daily chores, another long lost friend of D's who chatted delightedly to him before rushing off and of course the ubiquitous gaggle of Gambian children who appear spontaneously around any toubab who might possibly give them sweets or do something amusing like falling over (there is nothing a Gambian child finds funnier than a toubab falling on her great white arse). But with collection time fast approaching poo was, it seemed, scarcer than bacon in this country.

With just 20 minutes to collection time our saviour ran towards us up the road, D's long lost friend with a plastic bag of child's shit. Reverently we scraped it into the pot on the scales, but disaster! Only 27 of the necessary 50 grams! The clock ticking, the landlord summoned two of the small boys following our party and handed them each 5 dalasi. I had completely lost control of the situation, money was changing hands, I didn't know if their parents had been informed but as I was trying to work out my next move they pulled down their trousers and squatted in the street whilst all around them their friends laughed and clapped, cheering them on. As the first deposit hit the ground D let out a triumphant cry of "Praise God! God is great!" and all the adults started congratulating one another heartily as the children whooped. So all in all I'm really not sure if I did anything properly or right but it worked out and everyone seemed to come away happy, and I'm increasingly coming to realise that out here that's probably the best possible outcome. I gratefully accepted the sample – it would have been churlish not to as it was, after all, a gift from God.

*And by "general public" I mean "my Mum", but I know she loves me really.

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