January 8th, 2006
In yesterday’s Globe and Mail (Canada) there’s a report on sexual health research by Stephanie Nolen that everybody should read and share. Nolen deserves an award for this piece.
It’s called ‘Sex slaves for science?’ and tells the story of Nairobi prostitutes recruited into HIV research. [You'll have to register for the site to view the article, registration is free]. The sex workers are being studied because, despite having unprotected sex with high numbers of clients, they’re not getting HIV.
The article gives an account of the research from the perspective of the prostitutes, health professionals who work with them, and the researchers on the study. It indicates clearly issues of power imbalances in a study – the researchers are doing well academically and climbing the career ladder. They’re bringing in large scale grants to benefit their institutions and C.V.s. The participants (sex workers) are not doing so well. Some of them have contracted HIV, others clearly do not understand the research they’re involved in, and most want to exit prostitution but appear caught within it due to the fact that if they stay in the reseach trial they’ll get private health care.
Within research you’re supposed to always act with the needs and well-being of participants at the forefront of everything you do. Whether that’s designing a study, recruiting people into your research, during a project, or once it’s finished. If your participants don’t seem to understand the research, or are staying in it for reward or fear their health status will be negatively affected if they don’t continue, then you’ve failed as a researcher.
If you want to know the standards expected for ethical treatment of participants in health research, see the World Medical Association Declaration of Helsinki ‘Ethical Principles for Medical Research Involving Human Subjects’.
Whilst ethics committees are there to protect the wellbeing of participants, it is also the responsibility of the researcher to continuously monitor that participants are okay. If they don’t seem happy, are confused, or express a desire to leave your research it is your job to ensure they can quit quickly and without distress. As a researcher you may want them to remain in your research so you can collect data, publish findings, and advance scientific knowledge, or your career, or both. But those issues are NEVER as important as the needs of your participants – which should always come first.
Yes we need sexual health research – particularly on vital issues of HIV. But the public and many NGOs and charities already dislike and distrust researchers because of unethical or poorly explained or conducted past studies. Public accounts of alleged research misconduct don’t do us any favours. That’s why we have to ensure our research is always ethical, fair and fully understood – by everyone involved – researchers and participants.
And before we even get started on research we have to consider if we’d put participants from our country or from the same background as ourselves into the research we’re carrying out in other social groups or countries. Because when you read Nolen’s article you’ll think would a Canadian university put white, middle-class Canadians through what they’re expecting black, poor Kenyan women sex workers to endure in the name of research?Tweet