When NIAMS intramural researchers recently gathered for the Institute’s annual Intramural Research Program scientific retreat, they heard many talks about cutting edge research from esteemed colleagues, but they also learned another lesson about medicine’s darker history.
Dr. Dolen Perkins-Valdez, associate professor of literature at American University and self-described chronicler of American historical life, discussed her own research into a little-known incident that took place in 1970s Montgomery, Ala., involving the Relf family. Perkins-Valdez is the author of the historical novel “Take My Hand,” which explores the consequences of medical providers who performed unconsented sterilization procedures on the Relf family’s daughters and other African American women.
“I started this story about two little girls but as I finished,” Perkins-Valdez explained, “I realized I was writing a story about the nation. “
Perkins-Valdez’s presentation was a reminder to participants that practicing medicine is a privilege that must be practiced with caution and compassion, especially when treating historically oppressed populations. The repercussions of events like those Perkins-Valdez wrote about, as well as other examples, still echo today as communities continue to be wary of the medical community in general.
Perkins-Valdez’s talk came at a unique time in NIH’s history, especially with the agency engaged in major efforts to boost equity and diversity within the scientific workforce. As more voices from various communities become involved in the research conversation, they provide different perspectives – and might help mitigate other incidents in which communities are misused or abused in research or health care settings.
While “Take My Hand” is a fictionalized account, it is based on true events that affected the Relf family. Initially, a local health care clinic put the family’s young daughters on birth control without the parent’s consent. Eventually, the clinic’s providers sterilized the girls. Although their mother signed a consent document, she was not literate and did not understand that the tubal ligation operation she agreed to for her daughters was actually a sterilization procedure.
When the family’s social worker learned of the procedure, she alerted the Southern Poverty Law center, which sued the Alabama clinic in response. The issue soon got the attention of the U.S. Congress, where hearings were held. During the hearings, it was revealed that more than 3,000 clinics across the nation received government funding to carry out similar sterilization procedures.
Perkins-Valdez said she wrote about the Relf family’s ordeal because it caused such a media stir in the 1970s. Yet unlike the well-known Tuskegee Institute experiments and other abuses of the medical establishment, the story of the Relf family and others like them have largely been forgotten. She wanted modern readers to experience and learn from the tragic events through her book.
“This was a case about informed consent,“ she said. “It also raised important questions about race, class and disability.”
In a lively Q&A session, Dolan-Valdez discussed the lingering deeply rooted distrust of the medical establishment that some communities maintain as a result of the book’s events and other medical tragedies performed without consent. She explained that before trust can be earned, the medical community needs to acknowledge the traumatic history of these events more forcefully and use what we learn to improve how we work with negatively impacted communities. She ended with a reminder to our clinicians — “ good doctors listen and see [their patient]. You aren’t there just to give a diagnosis. Before you deliver news, back up and listen to your patient.”