A research project aimed to conduct biological and behavioural surveillance among HIV at-risk groups in an Asian country. The participants included people who use drugs, transgender people and sex workers. All three groups were potentially at risk of arrest under local law. Our project team did not foresee the legal implications as being an issue, and neither did the ethics approval body. The project was a government-approved study, which gave us a sense of security and reassurance.
We set up 13 different research sites, mostly in methadone clinics or community centers. Each site would do a quantitative survey and rapid biological testing. Within the first week of the research, two sites were raided by the police. Word had gone out that 20-30 people were gathering at each location, and this drew police attention. In this country, the police have Key Performance Indicators based on numbers of arrests, and therefore have an incentive to make as many arrests as possible. During the police raids, the researchers were able to respond effectively, and prevent our participants from being arrested. However, the raids scared the participants intensely, as they were already extremely marginalized in the local context. They could have been seriously harmed, and yet this was unnecessary.
After discussions within the project team, we decided to visit each police station and headquarters near every research site. At each location, we met with the head of the police station, showed them our Ministry of Health approval, and explained what had happened, and the resulting problems. It took a bit of explaining and education to help the police understand our research project and the good that could come from it. The head police officers agreed to give us their mobile phone numbers so that if any raids occurred we could call them to stop the raid. After that, only one more raid occurred on our sites, but it was very quickly and effectively called off.
We learned that it can be difficult to predict all the ways our research might put participants at risk. Ways of addressing unexpected ethical issues are important. When participants are engaged in illegal activities, additional steps may be necessary to inform authorities and avoid unnecessary harms.
This case study was provided by a researcher who wishes to remain anonymous to protect the confidentiality of the participants.
Further Discussion
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