The story of Henrietta Lacks and her “immortal” cells is not quite over. Her eldest son, Lawrence Lacks, has come forth requesting compensation from Baltimore’s Johns Hopkins University and possibly other institutions for the unauthorized use of the famous cells that prompted decades of medical advances.
The Washington Post reports that Lawrence Lacks, who says he is the executor of of his mother’s estate, says that an agreement between the National Institutes of Health and other family members regarding the use of his mother’s cells is not valid. The agreement did not include compensation.
The cells were taken from Henrietta Lacks, then 31, at Johns Hopkins while Lacks was being treated for an aggressive form of cervical cancer. The cells, dubbed HeLa cells, were taken without Lacks’ knowledge and consent and became the first to live outside the body in a glass tube. They are also the most widely used human cells in scientific research, as the Post notes, with vaccines, cancer treatments and in vitro fertilization, among several other techniques, deriving from the cells.
“My mother would be so proud that her cells saved lives,” Lawrence Lacks said in a statement, according to the Post. “She’d be horrified that Johns Hopkins profited while her family to this day has no rights.”
Hopkins responded in its own statement, emphasizing that when the cells were taken, there had been no established practice for informing or requiring permission from cell or tissue donors. There were also no regulations concerning the use of said cells in research:
Today, Johns Hopkins and other medical research centers maintain strict patient-consent processes for tissue and cell donation. It is now standard practice to have an Institutional Review Board examine every research study involving human participants before it is allowed to begin.
Johns Hopkins never patented HeLa cells, and therefore does not own the rights to the HeLa cell line. Johns Hopkins also did not sell or profit from the discovery or distribution of HeLa cells.
It’s been more than three years since the NIH came to an agreement with some of Lacks’ family, requiring scientists to get permission from the NIH before using Lacks’ genetic blueprint. NIH-funded researchers also are required to use a database of Lacks’ genome that can be accessed only through an application made to the agency. One of Lacks’ grandsons and a great-granddaughter were appointed to a working group to help make decisions.
However, Lawrence Lacks said that he didn’t sign off on that agreement and that when he asked the NIH for more information, he was cut off from the process.
“I really didn’t understand what was going on,” Lacks, now 82, said. “Instead of explaining it to me, they went three generations under me.”
Lawrence Lacks, his son and his daughter-in-law are planning to file a lawsuit against Johns Hopkins soon, according to the Post. The group said that they had reached out to other lawyers in the past, but were told that the case had passed the statute of limitations.
But Francis Lanasa said that he would use a “continuing tort” argument to claim that John Hopkins continued to violate the “personal rights, privacy and body parts” of Henrietta Lacks over time.
“We have been living with this for years,” Ron Lacks, Lawrence Lacks’ son, said. “It is getting to the point where it is the principle of everything.”
The family wants the cells to be owned by Henrietta Lacks’ estate, saying that they would set up a foundation to allow everyone to benefit from the cells.
Read more at the Washington Post.