The Experiment Must Continue. Melissa Graboyes

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The Experiment Must Continue - Melissa Graboyes Perspectives on Global Health

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rel="nofollow" href="#ua94d8cf2-e209-59d1-933e-b7b79d8233e5">MODERN NARRATIVE: A Male Circumcision Trial Canceled in Rakai, Uganda, 2005

       FIVE. Finding an Ethical Balance

       EXITS AND LONGER-TERM OBLIGATIONS

       HISTORICAL NARRATIVE: “Almost Completely Eradicated”

       The Pare-Taveta Malaria Scheme, 1955

       MODERN NARRATIVE: A New Malaria Vaccine?

       Testing the RTS,S Vaccine across Africa, 2010

       SIX. Coming to an Ethical End

       THE EXPERIMENT ENDS?

       SEVEN. Modern Medical Research and Historical Residue

       Appendix A. Swahili Glossary

       Appendix B. Further Reading on Global Medical Research

       Notes

       Bibliography

       Index

      ILLUSTRATIONS

       Figures

       1.1. Photo of Amani, Tanzania, archival materials

       2.1. Photo of finger prick, historical

       3.1. Lymphatic filariasis disease lifecycle

       5.1. Photo of lumbar punctures in the field, historical

       5.2. Malaria disease lifecycle

       Maps

       0.1. African continent; East Africa highlighted

       1.1. East African towns and main research stations

       3.1. Kenyan coast

       3.2. Tanzanian coast

       5.1. Western Tanzania/Lake Victoria region

       6.1. East Africa research sites

       6.2. Malaria vaccine testing sites, East Africa

       6.3. Malaria vaccine testing sites, Africa

       Tables

       2.1. Swahili words for “research” and translations

       2.2. Swahili words for types of dawa (medicine) and translations

       5.1. Benefits provided by specific research projects at the KEMRI/Wellcome Project in Kilifi, Kenya

       6.1. Pare-Taveta Malaria Scheme, 1954–66

       6.2. Effects and duration of the RTS,S vaccine

      MAP 0.1. African continent; East Africa highlighted. Map by Chris Becker.

      PREFACE

       Gonja, Take One

      It was sometime in the 1970s. Or the 1950s. Or maybe even the 1960s. In any case, it happened years ago. “It” happened in the town of Gonja, in the Pare area of northern Tanzania, and started with angry residents who were unhappy with researchers working in their village. The rabble-rousers were either a group of wholesome, yet angry, residents, or a group of unruly, pot-smoking youth who had recently returned from the war with Uganda. Their anger was directed at a set of researchers who were working in the village at night, either collecting mosquitoes or blood samples. Maybe the researchers were mumiani (bloodsuckers) and murderers, maybe not. In any case, they had made the bad decision to drive home that night rather than sleeping in the village. Their car was forced to a stop on a blocked road. Villagers appeared and began hurling stones. The car was damaged; the researchers sat inside, afraid. Flames appeared: the car was on fire. The researchers fled, and it was only due to the appearance of the police that no one was killed.

      The story of Gonja was the first account I heard when I asked people about the history of medical research in East Africa. Researchers remembered some version of the story, local people in the region knew about it, and, depending on the teller, the story was used to emphasize any number of points. When told by current medical researchers, it was a morality tale of what happened when well-intentioned scientists encountered uneducated villagers. Among a certain group of researchers, the only lesson to be learned from Gonja was that African rural residents were uneducated, unpredictable, and had yet to learn the benefits of biomedicine and scientific investigations. In some of the narratives, the teller continued into the present, explaining how the bad behavior of the Gonja residents resulted in the building of one of the largest police stations in the district. It also meant that there was almost no research done in Gonja for decades, and it wasn’t until 1993 that a research team was sent in to “check people’s feelings.” Only at that point—twenty, thirty, or forty years after the initial conflict—had villagers finally learned their lesson and begged for the researchers to return, to help reduce malaria and bring drugs, like in years past.

      Although I was happy that people shared their recollections of Gonja with me, I was perplexed by how many competing versions of the story I heard in just a matter of days. It was a story that continued to be told, but it seemed none of the tellers were preoccupied with fine details. The

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