Genoa Barrow | OBSERVER Senior Staff Writer
Henrietta Lacks’ cells were taken without her knowledge and have been used in medical and scientific advancements for decades.
Today, her family is preserving her legacy and encouraging African Americans to participate in clinical research, despite their matriarch’s experience.
“You don’t want to be left behind,” said David Lacks, Henrietta Lacks’ grandson.
David Lacks and his sister Jeri Lacks were guest speakers recently during a virtual discussion hosted by the California Black Health Network. The discussion, titled “Clinical Trials in the Black Community: The Past, Present and the Future,” was moderated by CBHN Executive Director Rhonda Smith.
Smith pointed out that many in the Black community who have historic mistrust of science and the medical profession often cite what happened to Henrietta Lacks. Lacks died of cervical cancer in 1951. She was being treated at Johns Hopkins Hospital in Baltimore when her tissue from a biopsy was sent to a renowned researcher’s lab. Unlike the cells of other patients, her cells, dubbed HeLa cells for the first letters of her name, didn’t die, they multiplied and still live on to this day.
Like her cells, Lacks’ story took on new life in 2011, with the publication of “The Immortal Life of Henrietta Lacks,” by Rebecca Skloot. The book also spawned a movie, produced by Oprah Winfrey. The media mogul also starred in the film, portraying Henrietta Lacks’ daughter Deborah.
“Jerry continues to keep the legacy of her grandmother active and conscious while at the same time using her family story as a platform to take part in issues we face nationwide, such as patient rights, health prevention, health disparities, health literacy, fighting cancer and partnerships between research and research participants,” Smith shared. “David is a patient rights advocate and travels the country along with Jeri sharing his grandmother’s important contributions to science. He and his family have been proud to speak the truth to power as they serve as catalysts for modern bioethics policies and informed consent laws that are affording patients an unprecedented seat at the table by advancing science, building trust and protecting research participants.”
Henrietta Lacks would have been 100 in 2020. A planned celebration was modified into a virtual observance because of the coronavirus pandemic. Ironically, HeLa cells played a part in developing the COVID-19 vaccine. Many don’t know that a Black woman’s cells helped end polio. Her own family didn’t know until decades later.
The Lacks family has launched several lawsuits for belated compensation, including one in 2021, and remains optimistic.
“The great thing is that we’re at the table. We’re not the last to know, we’re the first to know,” Jeri Lacks said. “We do have that opportunity to make decisions to see who’s using it, the HeLa genome, and what they’re using it for.”
In learning of their grandmother’s contributions, the family educated themselves on the science of genome sequencing and cell mapping. They urge Blacks to participate in beneficial research and work to ensure that there are more patient protections.
“When we go out, we try to encourage people to participate in clinical trials,” David Lacks said. “It’s a scary thing. Anything medical can be scary, but we talk to the scientists and we talk to the general public. We always talk about how, as African Americans, we don’t want to be left behind. If you don’t participate in it, you will really not know if the medicine will work for you.”
There are treatments that have been studied that work well for one group of people, but not for African Americans. The argument is that these results could be caught earlier if more Black people participated in the studies.
“That’s one of the reasons why we’ve got to participate,” David Lacks said. “We get the medicine thinking it’ll work and it doesn’t. When any of us goes to the hospital, the main thing is we want to get better.”
Communication is key, he said.
“Ask all the questions you want until you feel comfortable. Don’t sign nothing, don’t do nothing until you absolutely know what you’re doing,” Lacks advised. Those who work in science and medicine also can do better in making things accessible, he said.
“You have to meet people where they are and speak a language that they understand,” he said. “The most effective thing is education and communication. If you can educate the folks a little bit where they can understand things, they will trust it more.”
The Lacks family also talked about partnering with the World Health Organization (WHO) in 2021 to help eliminate cervical cancer. Relatives also are keeping a close eye on the Henrietta Lacks Enhancing Cancer Research Act, which President Donald Trump signed just before leaving office. The law requires the federal government to publish a report on government-funded cancer research trials, including participation levels among underrepresented populations.
“We’re just waiting to hear more information so we can advocate and try to break down these barriers that underrepresented and underserved people face when it comes to clinical trials and dismantle those barriers, and we’re happy to be a part of that,” Jeri Lacks said. There are also plans to honor Henrietta Lacks and help the public through a cancer center in her native Virginia.
The CBHN hosts a Health4Life webinar, “Women, Wisdom & Warriors,” at noon Thursday, June 16, in recognition of National Black Family Cancer Awareness Week. Guest speakers will stress the importance of being proactive about breast health and breast cancer screenings for Black women and encourage more diverse participation in research. Registration for the free session is available online at cablackhealthnetwork.org/health4life.