It wasn’t until 1971 (twenty years after they did it!), that her descendants first learned her genes had been sequenced and that the genome was made available to the public. But it took a number of years and in 2013, after a protracted fight, the family won the right to make the genome available only to scientists who apply, as well as to serve on a working group that will help review the applications.
They have never received any payment for Henrietta Lacks’s cells or any compensation from the profits that have come from the research done using her cells.
The lawsuit states that Thermo Fisher Scientific profits from the “unlawful conduct” of the Johns Hopkins doctors at the time and that its “ill-gotten gains rightfully belong to Ms. Lacks’ Estate.”
The case argues that the company is “making a conscious choice to sell and mass produce the living tissue of Henrietta Lacks, a Black woman, grandmother, and community leader, despite the corporation’s knowledge that Ms. Lacks’ tissue was taken from her without her consent by doctors at Johns Hopkins Hospital and a racially unjust medical system.”
Lacks’s story became widely known after a best-selling book, The Immortal Life of Henrietta Lacks, uncovered the origin of HeLa cells. The book was published in 2010, and a film based on it starring Oprah Winfrey came out in 2017.
The U.S. House of Representatives has recognized Lacks and her nonconsensual contribution to cancer research, CNN reported, while Johns Hopkins holds an annual lecture in her honor.
The family’s lawsuit states that Thermo Fisher Scientific markets at least 12 products that include the HeLa cell line, and it wants the company to give up “the full amount of its net profits obtained by commercializing the HeLa cell line.” The suit is also asking a court to order the company to stop using the cells without permission and to create a trust for the Lacks estate.
“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,” the lawsuit states. “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.”
For decades, Henrietta Lacks’ mother had the only tombstone of the five graves in the family cemetery in Lackstown, and Henrietta’s own grave was unmarked. In 2010, however, Dr. Roland Pattillo of the Morehouse School of Medicine donated a headstone for Lacks after reading The Immortal Life of Henrietta Lacks. The headstone is shaped like a book and reads:
Henrietta Lacks, August 01, 1920 – October 04, 1951.
In loving memory of a phenomenal woman, wife and mother who touched the lives of many.
Here lies Henrietta Lacks (HeLa). Her immortal cells will continue to help mankind forever.
Eternal Love and Admiration, From Your Family