Descendants of Henrietta Lacks promote trust between researchers, minority community

Descendants of Henrietta Lacks promote trust between researchers, minority community

The Lacks family is slowly re-building trust in the medical community — trust hard-earned by learning, after the fact, that their family matriarch’s cell line was used for medical research without her knowledge or consent. Discoveries from her cells have led to the polio vaccine and advances in in vitro fertilization and cancer care. Decades later, her genome was publicly released by the National Institutes of Health — this time finally with the family’s consent — further advancing scientific discovery and solidifying their trust in the research community.

By sharing Henrietta’s story, the Lacks family hopes to encourage more minorities to participate in medical research that may help eliminate disparities in diagnosis and treatment.

Nicholas Petrelli, M.D., Bank of America endowed medical director of the Helen F. Graham Cancer Center and Research Institute, moderates a panel discussion with descendants of Henrietta Lacks in the John H. Ammon Medical Education Center. The family and expert panelists from Christiana Care talked about the importance of research, bio specimens and the challenges of engaging the African-American community.
Nicholas Petrelli, M.D., Bank of America endowed medical director of the Helen F. Graham Cancer Center and Research Institute, moderates a panel discussion with descendants of Henrietta Lacks in the John H. Ammon Medical Education Center. The family and expert panelists from Christiana Care talked about the importance of research, bio specimens and the challenges of engaging the African-American community.

Two of Henrietta’s descendants — grandson David Lacks Jr. and great-granddaughter Victoria Baptiste — joined a panel discussion June 9 at Christiana Care to discuss the importance of research, bio specimens and the challenges of engaging the African-American community. The event was sponsored by the Helen F. Graham Cancer Center & Research Institute’s Center for Translational Cancer Research and also made possible by its Breast Cancer Research Program and the Delaware IDeA Network of Biomedical Research (INBRE). Nicholas J. Petrelli, M.D., Bank of America endowed medical director for the Helen F. Graham Cancer Center & Research Institute, moderated the discussion, and closed the program saying that “trust” was clearly the operative message.

“Henrietta’s story reminds us that we must always be aware of the human component in research,” said Jennifer Sims-Mourtada, Ph.D., senior research scientist and director of the Breast Cancer Research Program at the Center for Translational Cancer Research. She stressed that it is “absolutely essential” to have the participation of minority communities in research, or health disparities will become even greater.

Descendants of Henrietta Lacks toured the Helen F. Graham Cancer Center & Research Institute at Christiana Care during a visit in which they talked about their grandmother's legacy and the importance of fostering trust and respect among researchers and minority communities.
Descendants of Henrietta Lacks toured the Helen F. Graham Cancer Center & Research Institute at Christiana Care during a visit in which they talked about their grandmother’s legacy and the importance of fostering trust and respect among researchers and minority communities.

Panelist LeRoi S. Hicks, M.D., MPH, vice chair of the Department of Medicine, explained that strict regulations are in place today to ensure that minorities are appropriately recruited for, and represented in, medical research. He acknowledged that cultivating trust is key to breaking down long-established barriers, and added that engaging minority advocates is an important strategy for community-based participation.

“The distrust generated among members of minority communities through the years has led to a culture that reduces the number of blacks participating in medical research trials,” he said.

Jerry Castellano, Pharm.D., corporate director of Christiana Care’s Institutional Review Board (IRB), and Zohra Ali-Khan Catts, M.S., LCGC, Christiana Care’s director of Genetic Counseling & Gene Testing at the Graham Cancer Center, described how federal and state safeguards — including IRB oversight, the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA) of 2008 — protect autonomy and ensure that patients’ rights are respected.

Panelist Leila Hamroun, AIA, LEED AP, NCARB, breast cancer survivor and founding member of Christiana Care’s Oncology Patient Advocates for Clinical Trials, shared the importance of health professionals and patients partnering in research. “The reality is that I am only here today because somebody before me participated in a clinical research trial. Enrolling is the only way to ensure that I, and others, will be here for a long time. We can’t do it without each other. Without practitioners, we don’t have a path to recovery. Without patients, practitioners don’t have a path to discovery.”

Henrietta Lacks' great-granddaughter Victoria Baptiste looks through a microscope during a tour of the Center for Translational Cancer Research at the Helen F. Graham Cancer Center & Research Institute.
Henrietta Lacks’ great-granddaughter Victoria Baptiste looks through a microscope during a tour of the Center for Translational Cancer Research at the Helen F. Graham Cancer Center & Research Institute.

The immortal HeLa cell

Henrietta Lacks was a poor, black, tobacco farmer whose story was chronicled in the best-selling book “The Immortal Life of Henrietta Lacks.” The book has been translated into 25 languages and is sparking conversations in medical schools, hospitals and research labs across the country on the importance of establishing trust between researchers and patients and their families.

Henrietta Lacks.
Henrietta Lacks.

A few months before the 31-year-old’s death from cervical cancer in 1951, a doctor cut out a small sample of her cancer cells, which became the first and most important line of human cells ever to survive and multiply indefinitely in the laboratory environment. Known as an “immortal cell line” — and called HeLa cells in an attempt back in the 1950s to shorten her name and protect her identity — her genetic information has helped scientists make some of the most important advances in modern medical history. But her cells were taken and used without her knowledge or consent.

While the scientific advances from her cell line over the last six decades are historic, it is the lesson learned about informed consent and establishing trust with patients and their families that is causing medical researchers to take note of Henrietta’s story today.

When asked if Henrietta would have consented to the use of her cells and genome had she been given the chance, the Lacks descendants quickly answered “of course,” citing her nurturing, selfless character. Their message in sharing Henrietta’s story, they said, is to help researchers understand that the patient or family should be the first to know and decide about involvement in medical research studies, not the last to find out.

“If she had been given the opportunity to help, she would have,” said Victoria Baptiste, a nurturer, like her great-grandmother, who will soon embark on a career as a labor and delivery nurse, and patient advocate.

Baptiste reminded the audience, “The specimens you procure come from a person, and when people are involved, things need to be handled on a more sensitive level.” She encouraged the audience to start the conversation with minority communities in order to educate them and develop trust.

Knowing what they do now about the medical advancements stemming from the HeLa cells, David Lacks Jr. said he wouldn’t change his grandmother’s history.

“What I would change was our family being the last to know,” he said. “I am, of course, very proud — and awestruck — that my grandmother’s cells did so much for society that would not have been possible without this woman. Most cells only live a few weeks at best. Hers thrived so much longer. She was truly someone special.”

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