Among the many disruptions of the pandemic, one particular disappointment was the cancellation of the in-person annual meeting of the American Society for Bioethics and Humanities (ASBH), scheduled for Baltimore and set to coincide with the Berman Institute’s 25th Anniversary Celebration and the centennial of Henrietta Lacks’s birth. Yet despite the switch to a virtual format, the Berman Institute was able to host a plenary session that was the talk of the meeting and continues to reverberate.
“Social Justice and Bioethics Through the Lens of the Story of Henrietta Lacks,” was moderated by Jeffrey Kahn and featured Ruth Faden as a panelist. She was joined by Henrietta Lacks’s granddaughter, Jeri Lacks, architect Victor Vines, and Georgetown University Law Center bioethicist Patricia King.
Faden began the session by providing an overview of the Henrietta Lacks story, famed in the context of structural injustice.
“The structural injustice of racism defined in pretty much every way how this story unfolded,” she said. “What is wrong about what happened to the Lacks family engages every core element of human well-being. There were assaults on the social basis of respect, and of self-determination, on attachments, on personal security and on health. Mrs. Lacks and her children were poor Black people in a segregated world in which the most profound injustices of racial oppression were daily features of their lives.”
Faden was followed by Jeri Lacks who expressed the importance of continuing to let the world know about her grandmother’s story.
“Her cells were used to develop the polio vaccine and to treat HIV, and in creating in vitro fertilization. She is a person who continues to give life, and to preserve life,” said Lacks. “No matter what your race, your age, your social circumstances, she continues to improve your life.”
Victor Vines, an architect who was part of the architect team leading programming and planning for the National Museum of African American History and Culture and led the feasibility study for what will be Johns Hopkins University’s Henrietta Lacks Hall, spoke next about addressing racial injustice through architecture and design.
“When we started work on Lacks Hall, we didn’t talk a lot about architecture or design. We talked about what that story is that we want to tell through the building. Meeting with the Lacks family was critically important to that,” Vines said. “We had to understand what they went through and what they care about. The building still has to function and house the Berman Institute, so we had to meet their needs. And we discovered a third client, the East Baltimore community. At the end of the day, this building and university reside within that community, and they will be called to embrace this project – or not.”
King concluded the panel with a riveting and wide-ranging discussion that touched upon intersectionality, segregation, the Tuskegee experiments and participation in clinical trials, COVID, race as a social construct, and the role of consent, all within the framework of Henrietta Lacks’s story.
“Our narratives are important and should be thought of as lessons or homework for institutions,” she said. “They not only document the deep distrust we bring to health encounters but also convey relevant aspects of our lives that should be appreciated.”
As the session ended Kahn noted that perhaps it was fortunate the session had been virtual, so the recording “could be shared with others for posterity. I’m not quite speechless, but maybe close,” he said.