The eldest son of Henrietta Lacks wants compensation from the Johns Hopkins University and possibly other institutions for the unauthorized use of her cells in research that led to decades of medical advances.
Lawrence Lacks said that he is the executor of his mother's estate and that an agreement the National Institutes of Health made with other family members over the years regarding use of the cells were not valid. That agreement did not include compensation.
The cells collected from the 31-year-old Turners Station woman during a diagnostic procedure before she died of an aggressive form of cervical cancer in 1951 were the first to live outside the body in a glass tube. They were dubbed the HeLa cells and have become the most widely used human cells that exist today in scientific research.
Vaccines, cancer treatments and in vitro fertilization are among the many medical techniques derived from her cells.
"My mother would be so proud that her cells saved lives," Lawrence Lacks said in a statement. "She'd be horrified that Johns Hopkins profited while her family to this day has no rights."
Johns Hopkins officials said in a statement that when the cells were taken there was no established practice for informing or obtaining consent from cell or tissue donors, nor were there any regulations on the use of cells in research.
"Today, Johns Hopkins and other medical research centers maintain strict patient consent processes for tissue and cell donation," the statement said. "It is now standard practice to have an Institutional Review Board examine every research study involving human participants before it is allowed to begin."
The medical institution said it hasn't profited from the cells.
"Johns Hopkins never patented HeLa cells, and therefore does not own the rights to the HeLa cell line," the statement said. "Johns Hopkins also did not sell or profit from the discovery or distribution of HeLa cells."
The National Institutes of Health came to an agreement in 2013 with some of Lacks' family that required scientists to get permission from the government agency to use her genetic blueprint. The new agreement also required researchers who get NIH funding to use a database of Lacks' genome that they can only access by applying through the federal agency. One of her grandsons and a great-granddaughter were appointed to a working group to help make the decisions.
But Lawrence Lacks, 82, said he never signed off on that agreement. When he asked the NIH for more information, he said they cut him out of the process.
"I really didn't understand what was going on," Lacks said. "Instead of explaining it to me they went three generations under me."
An NIH spokeswoman said it could not respond to a request for comment Monday.
Lawrence Lacks and his son and daughter-in-law said in an interview they plan to file a lawsuit against Johns Hopkins in coming weeks. The family members said they had reached out to other attorneys in the past, but were told the statute of limitations had expired.
Francis Lanasa, the attorney who will represent the family, said that he would use a "continuing tort" argument, alleging that Johns Hopkins had continued to violate the "personal rights, privacy and body parts" of Henrietta Lacks over time.
"They are literally the foundation of modern medical science," Lanasa said of the cells.
Lawrence Lacks, a retired Amtrak engineer, said he remembers when Hopkins doctors came and asked his family for blood samples in the 1970s. They gave the samples not knowing they were being used to research the HeLa cells.
Lacks' story garnered national attention after Rebecca Skloot wrote a best-seller, "The Immortal Life of Henrietta Lacks," which is being made into a movie by Oprah Winfrey and HBO that is expected to be released later this year.
After the book's release, Hopkins pointed out that when Lacks was treated, there was no established practice of seeking consent to take patients' tissue samples for research.
But Ron Lacks, Lawrence Lacks' son, said pharmaceutical companies, authors, hospitals and scores of other institutions have made money off of his grandmother's cells. The family has even seen artwork made of pictures of her cells for sale on the internet.
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"Everyone else is making funds off of Henrietta's cells," Ron Lacks said. "I am sure my grandmother is up in heaven saying, 'Well, what about my family?'"
The family said they want to her cells to be owned by her estate and they would set up a foundation to allow everyone to benefit from the cells.
Johns Hopkins officials said they have worked with family members to develop a series of programs to recognize and honor Henrietta Lacks, including scholarships, annual symposia and an historical exhibit on the Johns Hopkins medical campus.
The family said that is not enough to correct the wrong done to Henrietta Lacks.
"We have been living with this for years," Ron Lacks said. "It is getting to the point where it is the principal of everything."
This story has been updated to reflect accurate information about how Johns Hopkins collected the cells from Henrietta Lacks. The regrets the error.