UO historian Melissa Graboyes worries that history is repeating itself with medical research in East Africa.

Through her research, Graboyes has identified many ethical questions concerning consent, participation and exploitation that have remained unanswered for decades as she’s examined historical case studies of researchers collecting blood samples in the middle of the night without any explanation, officials promoting experimental programs as “therapeutic,” and medical researchers who started referring to East Africans as a “pathological museum” in the 1950s. 

These case studies highlight questions that remain at the forefront of contemporary global health conversations but date back to at least the 1940s: Does the human subject understand what the researcher is doing? Have the risks of participation been adequately conveyed and agreed to? What types of conditions could be considered coercive? And, why is the medical research being conducted and are its benefits worth the associated risks?

The Clark Honors College faculty member wants her research to highlight the continuity of these ethical questions and raise concerns about the lack of progress over the last 75 years.

“The fact that we don’t have answers to these questions is impossible and unacceptable,” Graboyes said. “My hope is that a careful history of medical research in East Africa will provide useful information to contextualize debates and create more sensitive policy and research programs in the future.”

Graboyes recently published “The Experiment Must Continue: Medical Research and Ethics in East Africa, 1940-2014” to compare a number of historical and modern case studies that demonstrate the parallels between the past and present. An interview she conducted with a Tanzanian woman highlights some lingering ethical questions and demonstrates how historical context could be useful for current research efforts. 

When Graboyes first heard Mama Nzito describe “blood getting stolen” from her village in Tanzania, she assumed something was getting lost in translation. Graboyes was conducting interviews for her research — in Swahili — and Mama Nzito was explaining how white “experts” came to her school in the 1960s to “steal blood,” an act that she claimed killed several of her classmates.

Though Graboyes was initially skeptical, she found it difficult to completely dismiss Mama Nzito’s claims and turned to the local archives to investigate, as her methodology relies on overlaying oral narratives with careful analysis of historical archives. She soon uncovered information that supported elements of the Tanzanian’s story.

Medical reports and police documents outlined the deaths of six school children that occurred in the wake of a mass injection for the disease bilharzia. She also uncovered many official records describing how researchers would arrive in the middle of the night to draw blood, without providing any explanation, leading villagers like Mama Nzito to interpret their act as theft.

The ethical questions that this story presents mirror many that persist today. Did the villagers understand what was happening? Were the risks worth it? Was consent or coercion at play?

Graboyes also points to this story to illustrate the drastic disconnect between the ways in which East Africans and researchers perceive human experimentation. While the villagers grew suspicious of research efforts, the researchers dismissed them as uneducated villagers who didn’t appreciate the benefits of biomedicine and science.

Graboyes found many similar stories circulating in East African villages today that are still interpreted by researchers as rumors rooted in ignorance, instead of narratives driven by longstanding misconceptions.

“The global health realm discusses ethical and communication challenges like they’re new,” Graboyes said. “These historical case studies have shown that problems are not caused by research, per se, but by how it is done: the coercion, dishonesty and misunderstanding that characterized so many encounters past and present.”

Graboyes said these communication challenges are not always misguided or intentionally coercive. The language barrier complicates the issue, especially as there is no clear way to say “experimental drug” in Swahili, but there is a word for “medicine,” which has contributed to many villagers misinterpreting medical research as medical treatment. When the outcome is not one that cures disease or heals people, they grow increasingly wary of future experimentation.

“The ability to understand what is being done to you should be an ethical bedrock for medical research,” Graboyes asserts.

She hopes her research gives Africans a voice and helps people understand why Africans have resisted research efforts over the years.

She points to cases of parents hiding their children and people absconding from projects as examples of instances when Africans have resisted research efforts that they viewed as unjust, unethical or unbeneficial.

Graboyes has begun sharing her findings with global health officials to provide a better understanding of the region and to encourage more sensitive policies and initiatives that reflect the historical information. 

“It’s been eye-opening for people who work in the field to consider how deep their memory is for medical research,” Graboyes said. “Every encounter left a residue.”

The ways that this kind of historical memory can influence a region is the focus of her next research project in Zanzibar.

The island is the current recipient of a public health intervention to eradicate malaria, but some residents oppose the effort because they are wary of its potential consequences and would prefer the resources to be directed toward something they consider safer, like a clean water program.

For good reason, Graboyes said. Their weariness stems from deep historical relationships with malaria elimination campaigns that didn’t end well. After the World Health Organization started controlling for malaria in the 1960s and then stopped, the island suffered a number of fatalities as people’s immunity to the disease had diminished during eradication efforts. Residents are concerned the island will see similar results with current efforts and want to have a say in their participation, something that many global health officials consider illogical and irrational.

 “The local actors want to — and should be — involved in conversations about what public health initiatives they need and whether they want to assume the risks,” Graboyes argues. “We are bypassing that on a global level.”

At the root of both of Graboyes’ research projects, is a desire to see research produce real benefits for the populations that produce so many of its subjects.

“While we must continue with human experimentation, we cannot continue as we have been practicing it. Big changes must be made, the most critical of which is a commitment for real benefits to be returned to participants and their communities.”

—By Emily Halnon, University Communications