Equity, science, community and trust were the focus of Texas Biomedical Research Institute’s 2023 Global Health Symposium keynote presentation Friday, with the spotlight on two family members of a woman whose considerable contributions to medical research weren’t acknowledged until six decades after her death.
Henrietta Lacks was a Black woman whose cervical cancer cells have been used around the world to study cancer and infectious diseases and to develop treatments and vaccines. But those cells, which had an unusual ability to survive and reproduce, were taken from her without her consent and she wasn’t informed about how they would be used.
Shirley Lacks, the daughter-in-law of Henrietta Lacks, and David Lacks, the grandson of Henrietta Lacks, spoke about their work in raising awareness about consent and equity in biomedical research.
Henrietta Lacks’ contributions to science weren’t widely recognized until the publication of a 2011 book by Rebecca Skloot titled The Immortal Life of Henrietta Lacks, which became a 2017 film of the same name. Her family members have since worked to bring attention to bioethical issues and the need for medical researchers and practitioners to build trust with people of color.
“Two things you want to do is educate and communicate with the people,” said David Lacks. “If you can educate your target audience … speak on their level where they can understand it, they will be willing to trust you. If you can gain that trust, it’d go [a long way].”
The presentation was the final event of Texas Biomed’s two-day conference, which brought about 250 people to the San Antonio Botanical Garden, with another attending 250 virtually. Texas Biomed was founded in San Antonio 80 years ago.
More than 60 people from the research, health care, business and education fields were featured in panel sessions and keynote addresses that discussed topics in health care practice, delivery and access.
At a luncheon presentation, Shirley and David Lacks spoke about their family’s discovery that her cancer cells were taken without her consent and the impact of Skloot’s book.
In 2013, the family faced the decision of whether to continue to let researchers access the genomic data of Henrietta Lacks’ cell line, known as HeLa cells. After months of in-person conversations with doctors who sequenced Lacks’ genome they decided to be open to the idea.
Two family members accepted a seat on the HeLa Genome Data Access Working Group, a six-member group formed of medical, scientific and bioethic professionals, that reviews proposals submitted by scientists to use the HeLa cells.
David Lacks said most proposals are approved and that out of 98, only about two have been denied.
“Her genetics is our genetics, so whatever information you have about Henrietta, you have about us,” David Lacks said, explaining the dilemma the family faced. “Henrietta’s got 43-plus descendants so everybody got a different opinion, but unanimously we are proud of what the HeLa cells has accomplished for the world.”
Shirley Lacks said the Black community is still hesitant to trust medical professionals, referring to the infamous Tuskegee syphilis study, which enrolled several hundred Black men with and without syphilis from the 1930s to the 1970s but gave them ineffective or no treatment. She emphasized the importance of having medical professionals that reflect the community for better understanding.
“We’ve made mistakes, and there’s been quite a bit of mistrust out there, particularly for those individuals who are underserved or are not seen enough,” said Texas Biomed CEO Larry Schlesinger after the Lacks family’s presentation.
“I think we need to do better. I think this community understands that we need to do better. … Texas Biomed has our logo of ‘Health starts with science,’ but we’re now going to say ‘Health starts with equitable science,'” he said.
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