Henrietta Lacks was a poor, black tobacco farmer whose cells, taken without her permission in 1951, have since became one of the most important tools in medicine. The University of Southern Maine welcomed two of her descendants to speak on the intersection of race and bioethics on Oct. 13.
Known to scientists as HeLa, Lacks’ cells, still living, have been crucial in developing the polio vaccine and in cloning, gene mapping, in vitro fertilization and more. But her family was never compensated for them.
Alfred Carter Jr., Henrietta Lacks’ grandson, and Veronica Robinson, her great-granddaughter, spoke of their experiences in the wake of their ancestor’s scientific contribution, calling for better communication and greater compassion in the healthcare industry.
“You have to talk to people in ways that they understand. If you don’t, you’re stealing their rights from them, you’re stealing their knowledge ... In the same way those were stolen from my (great)-grandmother,” Robinson said to a packed crowd at USM’s Hannaford Lecture Hall.
“Don’t look at your patients as a number. They’re people,” said Carter.
The event, “Descendants of Henrietta Lacks Speak Back,” was held as part of USM’s Gloria S. Duclos Convocation, a year-long series of events on the theme of “Race and Participatory Democracy.”
In a presentation to students, faculty, staff and community members, Carter and Robinson discussed the bioethical concerns of informed consent, access to health care, compensation and recognition for medical contributions and racial disparity in the healthcare industry.
These issues were brought to light in the internationally-successful book and New York Times bestseller, “The Immortal Life of Henrietta Lacks” by Rebecca Skloot, and the HBO movie of the same name starring Oprah Winfrey.
Students, in a Q&A session following the presentation, asked the Lacks descendants what they can do, as individuals, to shape the discussion around race and bioethics.
“Everything that you learn here today ... and by your school starting this conversation ... it’s the beginning,” Robinson said of the Convocation theme. “Now it’s your responsibility to go out into the community and share what you know.”
Carter urged students to “have integrity” in everything they do.
Robinson, who serves as a Lacks Family representative on a panel for the National Institutes of Health, is also studying to become a registered nurse at Baltimore City Community College.
She stressed the importance of treating patients with respect. At the end of the day, she said, each patient is someone’s daughter, mother or grandmother.
“Just remember that, when you start working with people, they’re not subjects. Remember to treat people the way you want them to treat your family,” she said. “At the end, you’re sacrificing your time so that you can be somebody’s superhero.”
And, despite the injustice the Lacks family endured, both Carter and Robinson said, change comes from informed discussion.
“The family was treated disrespectfully,” said Carter, “But it’s people like you all that keep us pushing forward to find the good that came from the bad, and create a new platform to be able to give back and help.”
By Alan Bennett, Office of Public Affairs
Read the Portland Press Herald story here.