The World Health Organization (WHO) honored the late Henrietta Lacks with a posthumous award to recognize her life, legacy and contribution to science as a Black woman whose cells became the first “immortal” cell line, leading them to become one of the most important and widely used in scientific research.
The WHO’s Director-General Dr. Tedros Adhanom Ghebreyesus honored Henrietta Lacks with a WHO Director-General’s award, “recognizing the world-changing legacy of this Black American woman who died of cervical cancer, 70 years ago, on 4 October, 1951,” said the health agency in a news release. Henrietta Lacks died at the age of 31.
The cell line, called HeLa, laid the foundation for many groundbreaking discoveries, including vaccines for the human papilloma virus (HPV) and polio; drugs for HIV and cancers; gene mapping; IVF treatment; and more recently, for crucial COVID-19 research. Fittingly, it was also used to develop the vaccine against cervical cancer.
The name of the HeLa cells was derived from the first two letters of Henrietta Lacks’ first and last names.
While undergoing treatment, researchers took biopsies from Mrs. Lacks without her knowledge or consent. Lacks’ cells demonstrated unique properties as they were able to proliferate extensively, leading to development of the immortal HeLa cell line. Lacks’ inadvertent contribution remained unknown to her family for years, raising concerns of consent and proprietorship against the backdrop of race issues.
The issues continue today as Henrietta Lack’s estate sued Thermo Fisher Scientific last week over profiting off her “stolen cells” that were taken from her without her knowledge and consent as part of a “racially unjust medical system.”
“In honouring Henrietta Lacks, WHO acknowledges the importance of reckoning with past scientific injustices, and advancing racial equity in health and science,” said Dr. Tedros. “It’s also an opportunity to recognize women — particularly women of colour — who have made incredible but often unseen contributions to medical science.”
The global scientific community had tried to conceal Henrietta Lacks’ identity, including her race and story. The WHO recognition is an attempt to try to heal this “historic wrong,” said the agency.
Lawrence Lacks, Mrs. Lacks’ eldest 87-year-old son, received the award at the WHO office in Geneva. He was accompanied by several of Henrietta Lacks’ grandchildren, great-grandchildren and other family members.
“We are moved to receive this historic recognition of my mother, Henrietta Lacks – honoring who she was as a remarkable woman and the lasting impact of her HeLa cells. My mother’s contributions, once hidden, are now being rightfully honored for their global impact,” said Mr. Lacks. “My mother was a pioneer in life, giving back to her community, helping others live a better life and caring for others. In death she continues to help the world. Her legacy lives on in us and we thank you for saying her name – Henrietta Lacks.”
Health inequities persist even today as Black women continue to be disproportionately affected by cervical cancer, according to the WHO. Studies in various countries show that Black women continue to die of cervical cancer at several times the rate of white women. Moreover, 19 of the 20 countries with the highest cervical cancer burdens are in Africa.
The Lacks family is committed to changing these statistics as they engaged in a discussion with WHO about the agency’s ambitious plan of eliminating cervical cancer. This past year, it launched the WHO’s Global strategy to accelerate the elimination of cervical cancer, which also marked the year of Henrietta Lacks’ 100th birth anniversary. The agency says this “historic campaign marks the first time ever that all WHO Member States have collectively resolved to eliminate a cancer.”
The Lacks family is joining the WHO to advocate for equitable access to the HPV vaccine, which protects against cervical cancer and other cancers as well. The vaccine does not reach girls in low- and middle-income countries effectively due to issues of supply and cost. The disparity is concerning as less than 25 percent of low-income countries had access to the HPV vaccine through their national immunization programs, compared with more than 85 percent of high-income countries, as of 2020.
Lacks’ story made headlines after a book was published in 2010 by author Rebecca Skloot called “The Immortal Life of Henrietta Lacks” that detailed her life and the story of her cells.
Lawsuit Against Thermo Fisher
Last week, Lacks’ estate, which is overseen by her grandson Ron Lacks, filed a lawsuit against Thermo Fisher Scientific over continued reproduction and selling of HeLa cells. While Lacks’ cells were taken and harvested at a time when procedures of consent were not a part of scientific and medical research as they are today, the Lacks family says Thermo Fisher Scientific continues to commercialize them even after the story became known.
The lawsuit claims that Thermo Fisher is profiting off the stolen tissue samples, despite the broad publicity that Lacks’ story has received over the past decade and its link to a long tradition of discriminatory practices in medicine.
The lawsuit outlines some of the systemic racial abuses in the medical system at the time that led to the “horrifying dehumanization of Black patients.” This included segregated wards at Johns Hopkins containing Black patients with cervical cancer whom white doctors would collect samples from without their knowledge or consent. Johns Hopkins maintains that it has not sold any of Lacks’ cells.
Another example outlined is the “Mississippi Appendectomy” that began in the 1920s, which involved the systematic forced sterilization of poor Black women without their knowledge or consent under the guise of appendectomies in order to prevent them from reproducing and to provide young, inexperienced doctors the opportunity to practice the hysterectomy procedure.
The lawsuit asks the court to order Thermo Fisher Scientific to “disgorge the full amount of its net profits obtained by commercializing the HeLa cell line to the Estate of Henrietta Lacks.” It also wants Thermo Fisher Scientific to be permanently dislodged from using HeLa cells without the estate’s permission.
The Lacks family is also concerned over the wide availability of Lacks’ genetic material, saying that “some of the most private information about Ms. Lacks and her family has been exposed to the general public.”
In the lawsuit, the family stated, “Thermo Fisher Scientific’s choice to continue selling HeLa cells in spite of the cell lines’ origin and the concrete harms it inflicts on the Lacks family can only be understood as a choice to embrace a legacy of racial injustice embedded in the US research and medical systems.” Black people have the right to control their bodies. And yet Thermo Fisher Scientific treats Henrietta Lacks’ living cells as chattel to be bought and sold.”
The family has put forth a single charge of unjust enrichment and is requesting a jury trial for it. It is also pursuing repayment from Thermo Fisher in the form of “the full amount of its net profits obtained by commercializing the HeLa cell line.” They are also seeking a permanent order that would stop Thermo Fisher from using the cell line in any way without the family’s permission, in addition to establishing a “constructive trust managed by the estate that would take ownership of all HeLa cells and related intellectual property and proceeds currently owned by Thermo Fisher.”
In 2013, the Lacks family came to an agreement with the National Institutes of Health (NIH) to have control over the genetic information generated when researchers sequenced the genome of the HeLa cells. However, the agreement did not include a share of any profits that researchers or pharma companies may make from use of the cells.