The Knowledge Gap of Research Ethics

Vulnerable populations should be protected through research rather than from research.


It seems an obvious thing to do, right? I mean why shouldn't research be used to help alleviate the struggles of some of the world's most vulnerable people? Well, as it turns out, researchers do not exactly have the greatest ethics track record when it relates to working with those most vulnerable. Much of our collective spirit in this regard can be embodied in how we often respond to a single phrase:

"Human experiment."

It's a term that makes many people cringe.

If you're not among the scientific world's circles you likely only hear the term when it's used to decry an episode of highly unethical research. And we certainly have enough examples to point to. Perhaps the most notorious is when Nazi Germany conducted unspeakable human experiments on concentration camp prisoners. But we need not go beyond our borders to find examples.

Between 1932 and 1972 the US Public Health Service conducted the Tuskegee Syphilis Experiment in which low-income black men in Alabama were told they were receiving free healthcare when in reality their dying was integral to the study, even when penicillin was found to be an effective cure.

During the same time period, in 1946-1948, a US-funded study deliberately infected nearly 700 Guatemalans with syphilis to study its effects. The US didn't actually apologize for this until 2010 when then-Secretary of State Hillary Clinton and former Human Services Secretary Kathleen Sebelius released a statement.

Then there's the story made famous by Rebecca Skloot in her book The Immortal Life of Henrietta Lacks. In 1951 doctors at Johns Hopkins removed two samples from Henrietta's cervix without her permission. The cells from those extracts went on to become the HeLa cells, one of the most commonly used cell lines in all of biomedical research. Research using these cells actually paved the way for advances toward the polio vaccine and chemotherapy.

Still, it begs the question: With such storied examples of unethical research, including those surely developing somewhere in the world right now, how do good researchers take back the narrative? How can they maximize their ability to protect vulnerable people through research while minimizing the need for ethics committees and human rights organizations to intervene?

For Dr. Phaik Yeong Cheah, Head of Bioethics and Engagement at the Mahidol Oxford Tropical Medicine Research Unit in Thailand, the answer is actually through more research, particularly ethics research.

Dr. Cheah's nearly 15 years of working with some of the world's most vulnerable populations, including refugee children at the Thai-Burma border, have served to reinforce her believe that there is a serious knowledge gap in research ethics, especially in low-income settings. She believes ethical issues in research must be addressed not only philosophically but also head-on through empirical research. The overarching theme of her work has been how to ensure that all research, especially research involving vulnerable populations, is built upon an ethical framework.

I asked her why she has spent her career focusing on research ethics, and what insights she could provide to help the general population understand the importance of this field.

-This article was supported with funding from the International Reporting Project.

-Photo: Doctor injecting a patient with placebo as part of the Tuskegee Syphilis Study, by .Jrtayloriv at en.wikipedia [Public domain], from Wikimedia Commons