The Experiment Must Continue. Melissa Graboyes
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And, finally, I can thank in print my friends and family. Research and writing happened over nearly a decade and across three continents. Personal friends in Eugene helped make finishing this book easier to bear; many good times have been had with Katie and Grant Schoonover both on running trails and around the dinner table. Erica and Tom Collins, Daphne Gallagher and Stephen Dueppen, Lindsay Braun and Larissa Ennis, Heather McClure, Kristin Yarris, and Sharon Kaplan have all been great company and superb supporters when my motivation waned. There has also been a solid cohort of friends from graduate school who have tolerated many emails and phone calls full of questions; Arianna Fogelman, Lynsey Farrell, and Andrea Mosterman deserve particular thanks.
Finally, as my dedication referenced, each of my families has been instrumental in helping me to finish this project. My parents, Sue and Tony Graboyes, have been an inspiration in their own ethos of hard work, and my father was a constant (if sometimes nagging) reminder that I was not finished. The extended Famiglia Burlando—particularly Liliana Molano and Franco Burlando—showed great tolerance for working summer vacations. Our time in Italy is full of meals we don’t have to cook, clothes that we don’t have to launder, iron, or fold, and impromptu gatherings that we don’t have to plan, but which involve my favorite Zii (Nino, Vittoria, Paolo, Daniela). I am nearly certain that it’s only with this type of assistance that a large task—like the writing of a book—can occur while having a small child underfoot.
The person most deserving of thanks is Alfredo Burlando. I am very lucky to have a partner in life who is a constant source of intellectual stimulation and unquestioning support. Much of my time in East Africa happened with him by my side, and we have learned about the region together. Alfredo listened to many of these arguments take shape and was a willing reader even though my book includes no mathematical equations and few charts. Depending on the day and the need, he has cooked, cleaned, changed diapers, edited, and even helped with the odd footnote. He and Silvia have borne the brunt of long, odd, work hours without too many complaints; I love them both for that, and much, much more.
ABBREVIATIONS
AIDS | Acquired Immunodeficiency Syndrome |
ART | Antiretroviral Therapy |
CDC | Centers for Disease Control and Prevention (USA) |
CIOMS | Council for International Organizations of Medical Sciences |
CRO | Contract Research Organization |
DC | District Commissioner (colonial East Africa) |
DDT | Dichloro-Diphenyl-Trichloroethane |
DEC | Diethylcarbamazine |
DIBD | Division of Insect-Borne Diseases (Kenya) |
DSMB | Data Safety and Monitoring Board |
DO | District Officer (colonial East Africa) |
EAC | East African Community |
EAHC | East Africa High Commission |
EAMS | East African Medical Survey (Mwanza, Tanganyika) |
EMA | European Medicines Agency |
EPI | Expanded Program on Immunization |
FDA | Food and Drug Administration (USA) |
FPA | Filariasis Prevention Assistant (Zanzibar) |
FRU | Filariasis Research Unit (Mwanza, Tanganyika) |
GAELF | Global Alliance to Eliminate Lymphatic Filariasis |
GAVI | Global Alliance for Vaccines and Immunization |
GCP | Good Clinical Practice |
GMEP | Global Malaria Eradication Program (WHO) |
GPELF | Global Programme for the Elimination of Lymphatic |
Filariasis | |
GSK | GlaxoSmithKline (UK) |
HIV | Human Immunodeficiency Virus |
IRB | Institutional Review Board |
IRS | Indoor Residual Spraying |
KAR | King’s African Rifles (colonial East Africa) |
KEMRI | Kenya Medical Research Institute |
KNA | Kenya National Archives |
LF | Lymphatic Filariasis |
MDA | Mass Drug Administration |
MDGs | Millennium Development Goals (United Nations) |
MDR TB | Multidrug-Resistant Tuberculosis |
MRC | Medical Research Council (UK) |
NIMR | National Institute of Medical Research (Tanzania) |
NTD | Neglected Tropical Disease |
OHRP | Office for Human Research Protections (USA) |
PC | Provincial Commissioner (colonial East Africa) |
PEPFAR | President’s Emergency Plan for AIDS Relief (USA) |
RGA | Regional Government Authority |
RHSP | Rakai Health Sciences Program (Uganda) |
SCD | Sickle Cell Disease |
STI | Sexually Transmitted Infection |
TB | Tuberculosis |
TNA | Tanzania National Archives |
TPRI | Tropical Pesticide Research Institute (Arusha, Tanzania) |
UNAIDS | Joint United Nations Programme on HIV and AIDS |
UNICEF | United Nations Children’s Fund |
VSS | Vital Statistics Survey (Pare-Taveta Malaria Scheme) |
WHO | World Health Organization |
XDR TB | Extensively Drug-Resistant Tuberculosis |
ZNA | Zanzibar National Archives |
THE EXPERIMENT BEGINS
1
MEDICAL RESEARCH PAST AND PRESENT
The East African Medical Survey
As an introduction it is essential to emphasize the difficulties met with in the carrying out of adequate medical surveys in East Africa. Many of the tribes are primitive and intensely suspicious: there is fear of witchcraft and it is not unusual for a request from us for even a specimen of faeces to be met by a firm refusal on the grounds that this specimen of stool is required for the performing of magic rites aimed at bewitching the donor of the specimen. The taking of a specimen of blood is especially resented: in one survey this resentment was so active as to lead to an abandoning of the survey. Medical officers face on one side the criticism that too many refusals will give a biased and incomplete picture, while on the other side they may be criticized for stirring up trouble in the areas in which they work. Ideally it is essential to carry out repeated exams of the excreta and of the blood . . . from each of the 4,000 natives on whom medical exams have been carried out. Any attempt to enforce this impossible standard would quickly arouse such deep resentment among the people that there would be no alternative but to abandon work. The most that could be expected is one specimen each of stools, urines and bloods from a large proportion of the natives examined and even this calls for much diplomacy and knowledge of the African way of life. Much credit is due to the medical officers for their perseverance even in the face of personal danger, as has twice been the case.1
Lieutenant Colonel William Laurie, the first director of the East African Medical Survey (EAMS), paints a fairly bleak—if accurate—picture of medical research in the region in the 1940s and 1950s. He characterizes it through the difficulties, fear, suspicions, refusals, and resentment that surrounded the work; even a simple request for a specimen of feces could be met by a “firm refusal.” Conflict and misunderstandings were commonplace and, from his perspective, there was little to celebrate other than his brave workers. Laurie’s honesty and frustration also indicate that, although this medical research happened in a colonial context and under unequal power conditions, Africans were no mere subjects of medical research. They were active participants in these encounters, forcing projects to change and adapt based on what they deemed acceptable. In doing so, Africans shaped the practical and ethical norms in the literal and figurative space of the “field.”
The post–World War II project was part of what