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 —> Read More