As a third world doctor, I thought I'd seen it all. Until I signed up for a British medical surveyby Elizabeth Pisani / April 26, 2009 / Leave a comment
In my day job as an epidemiologist I collect blood and urine from people, ask them questions about their sex lives and assure them that they’re contributing to the greater good of science. But I’ve just been put through the procedure myself for the first time. And I didn’t like it one bit.
I am one of half a million people in Britain who are being poked, prodded, measured and questioned about diet and sex life—all in the name of science. The massive survey of 40 to 69 year olds, called the Biobank study, will store fluids, measurements and information in perpetuity for largely unspecified research purposes. “By analysing answers, measurements and samples collected from participants, researchers may be able to work out why some people develop particular diseases while others do not” is about as specific as the information leaflet gets. Researchers will be able to look at our medical records, too.
What did I get in return? A cup of tea and the warm glow of knowing that I had contributed, in some vague way, to the sum of human knowledge. When I take blood samples from sex workers in Indonesia or East Timor, at least I give them their choice of lipstick, a bag of condoms and treatment for any visible infections. I also give them a coded slip so that they can return anonymously for their test results and free treatment if they need it.
Not so with Biobank. I signed away my right to learn the results of tests run on my blood or urine or any associations uncovered between my genes, behaviour and health. Researchers fiddling with my fluids may discover that I am at high risk of a preventable condition. I may even already have it. But they will not tell me or my GP, even if it might save my life.
All of this is made clear in the “informed consent” process: a series of statements that appear on a touch screen computer, onto which I tap “I agree.” The first statement: do I agree that “I have had the opportunity to ask questions.”? Do I agree? Yes, though the person who gave me the opportunity, a receptionist who looked about 12, could not answer them. Later, I asked a research assistant: how can I both give up all rights over my samples, even after death, and have the right to withdraw from the research at any time? She couldn’t answer. I asked to see her supervisor. She came back with the 12 year old.
At the end of the process I am no more informed, but quite cross. Information that I give free to a taxpayer-funded study might, in time, be used to benefit shareholders of big drug companies. If they use my fluids to develop a profitable drug that I need, I won’t get it free. And if big pharma makes money as a result of the study, they have no obligation to reinvest it in public health research. I sign my rights away anyway, out of sheer curiosity.
Then comes the questionnaire, a textbook example of sloppy research design. How many “units” of red wine do I drink in “a typical week”? How many units of white? Better yet: how many people have I have sex with in my life? My entire life!
Everyone in this study has probably been sexually active for at least 20 years. There’s not even an open-ended “more than x” category. They want a precise number, so I make one up. A £62m research project should do better than this.
Now for the prodding and poking. I puff into a tube (lung function), put my foot in a clamp (bone density), jiggle on a vibrating platform (body fat). They are using equipment I could never afford in my backstreet surveys. I ball my fist so my vein stands up like a whiplash and chit-chat about the cost of vaccutainers and phlebotomy techniques. The researcher, a fully-qualified doctor, jabs at my bulging blue vein, misses, straps on a new, unaffordable vaccutainer, tries again.
Eventually she’s left with samples that will contribute to the greater good of science. I’m left with a bruise.