Henrietta Lacks’ living family members are planning to file suit against Johns Hopkins University for the unauthorized use of the late Maryland woman’s cells, which have famously lead to numerous medical advances over the years.
The Baltimore Sun reported on Wednesday that Henrietta’s son, Lawrence Lacks, has obtained an attorney to argue that by using his mother’s cells without permission, Johns Hopkins has violated her “personal rights, privacy and body parts.”
The cells taken from the 31-year-old, who died of an aggressive form of cervical cancer in 1951, were the first to live outside the body in a glass tube. They were used to create the first immortal human cell line, HeLa. Some of the medical breakthroughs derived from the HeLa cells include vaccines, cancer treatments and in vitro fertilization, according to the Sun.
“My mother would be so proud that her cells saved lives,” Lawrence said in a statement to the Sun. “She’d be horrified that Johns Hopkins profited while her family to this day has no rights.”
In response, Johns Hopkins said that Henrietta’s cells were taken before a formal consent process was adopted and research use regulations were in place. The university also claimed that it has not profited from HeLa, as they never patented the line.
A 2013 agreement was made with some of Henrietta’s descendants (a grandson and great-granddaughter) and the National Institutes of Health requiring scientists obtain permission to use the HeLa cells, according to the Sun, but 82-year-old Lawrence told the newspaper that he never signed off.
“Instead of explaining it to me they went three generations under me,” he said.
Lawrence and his son Ron Lacks want the HeLa cells to be owned by Henrietta’s estate, and made accessible through a foundation. Though Johns Hopkins recognizes Henrietta through scholarships, an annual symposia and an on-campus historical exhibit, according to the Sun, the family said it is not enough.
“Everyone else is making funds off of Henrietta’s cells,” Ron told the Sun. “I am sure my grandmother is up in heaven saying, ‘Well, what about my family?’ ”
Lacks’ story is the subject of an upcoming HBO film starring Oprah Winfrey. The Immortal Life of Henrietta Lacks – adapted from Rebecca Skloot’s 2010 book of the same name – is told from the perspective of Winfrey’s character, Lacks’ daughter Deborah Lacks.
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The HBO film debuts on Saturday, April 22.