Understanding Tuskegee's Legacy (Part 1)

First of two parts.

Four decades after the Tuskegee experiments ended, during a workshop on health literacy and informed consent, Dr. Alicia Fernandez of UC San Francisco said something remarkable and even chilling.

“That story,” she said of the infamous research, “most of my (medical) residents don’t know it.

“I guess they didn’t read the paper that day,” she added in disbelief. “But my patients know it.”

At Tuskegee, the subjects knew neither the title of the research (“Tuskegee Study of Untreated Syphilis in the Negro Male”) nor that they’d even been diagnosed with syphilis. When penicillin was found effective for syphilis, they continued to be studied but not treated with it. They suffered, infected others, and many died. This went on for 40 years, with government support.

The research began at the time Nazi doctors were engaged in the infamous work that resulted in the Nuremberg Code. But Tuskegee is in America, and the research continued long past the Nuremberg verdicts. (Good sources for learning about Tuskegee are here and here.) 

Though the men apparently participated willingly, they were lied to about what they were participants in. And so it was fitting that the workshop at the Institute of Medicine in Washington, D.C., coincided with the anniversary of Tuskegee’s end, on July 29, 1972. Tuskegee holds valuable lessons in health literacy, informed consent and the importance of understanding how they relate.

There is no overstating Tuskegee’s legacy of distrust in medicine. Of the major principles of medical ethics -- respect for persons, or autonomy; do no harm; do good; and justice -- Tuskegee betrayed all four.

Disparities in research and treatment are hot policy topics in medicine, and new doctors should understand their inheritance of patient distrust. Dr. Fernandez’s revelation indicates that short memory is another legacy of Tuskegee.

While the D.C. workshop took place, a group of physicians, scientists and interested others participated in a Twitter dialogue about Tuskegee. The events were unrelated, and yet many of the issues raised during the former, including low participation in research among blacks, were addressed in the latter.

“Even growing up my parents told me about this,” one participant tweeted. “Many blacks know of it and fear any ‘research’ about them.”

The TweetChat was organized around the hashtag #NSTNSchat. The acronym stands for National Science & Technology News Service, devoted to inspiring academic and professional interest among African-Americans in science, technology, engineering and math, or STEM for short.

“Are African-Americans still afraid of being exploited by science?” #NSTNSchat participants were asked. The answer is yes, but there is much more to it, and the dialogue was rich with insights into the role and importance of bioethics, strategies for affectively addressing health disparities and distrust, and the need for more African-American STEM specialists. 

Key players behind the dialogue were Dr. Caleph Wilson of the University of Pennsylvania, Princeton sociologist and author Ruha Benjamin and Dr. A. Breland-Noble of Georgetown. So engaged was this TweetChat, with so many different voices, that it went well beyond its allotted time.

The #NSTNSchat transcript is long and has many threads. So I tried something different in writing about it. I captured many of the main tweets and edited them into story form. It is constructed of the actual tweets, mostly verbatim, with some editing mainly to spell out abbreviations and acronyms, add punctuation and subtract redundancy. Context might change some from the original dialogue, and the tweets are presented as one voice, not multiple authors. 

The composite story appears in the blog post below. The original Tweets, and their authors, can be found on the Storify transcript.

For more about the National Science & Technology News Service, visit the website, and follow  @TheDarkSci on Twitter.