The Henrietta Lacks movie has restarted the conversation about Johns Hopkins Hospital's controversial decision to use Lacks' cancer cells for research without her knowledge or consent. (Ulysses Muñoz / Baltimore Sun)
The eldest son of Henrietta Lacks doubled down Friday on his efforts to reclaim his mother's legacy, calling for a congressional inquiry into Johns Hopkins Medicine's unauthorized use of her cells and the suspension of nearly $2 billion in National Institutes of Health funding.
Lawrence Lacks, the executor of his mother's estate, said the years of research using his mother's cells helped the medical institution build its reputation and led to scores of studies and medical breakthroughs. All of this in turn contributed to the funding Johns Hopkins received and continues to get, Lacks and other family members said.
In a statement, Lacks said he wanted a congressional inquiry into the money the medical institution made from Henrietta Lacks' cells, known as the HeLa cells, and called for the NIH to suspend $1.89 billion in research funding allocated to Johns Hopkins for 2017 during any investigation.
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 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.
Lawrence Lacks, 82, was not available for a phone interview Friday, but his son, Ron Lacks, and nephew Alfred Lacks Carter spoke on his behalf.
"The HeLa cells put Johns Hopkins at the top of the research chain worldwide," Ron Lacks said. "And we're thinking that we need Congress to step in and stop Johns Hopkins until we find out what is going on."
Hopkins declined to comment Friday, referring to a statement it released Monday that said it had not made money 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." It also said there was no established practice for informing or obtaining consent from cell or tissue donors when the cells were taken, nor were there any regulations on the use of cells in research.
NIH spokesman John Burklow disagreed with Lacks' belief that NIH funding is based on research of the HeLa cells.
"The assertion that NIH funding to Hopkins is given in large part due to the HeLa cell discovery is not correct," Burklow said in a written statement. "NIH provides funding support to Hopkins and other research institutions for a broad array of projects that are peer reviewed for scientific merit, public health needs, and scientific opportunity, among many other considerations."
Lawrence Lacks also criticized an agreement NIH reached with other family members in 2013 that required scientists to get permission from the government agency to use her genetic blueprint. The 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. Two family members were appointed to a working group to help make the decisions.
While NIH officials said they would ask biomedical researchers not funded by the agency to abide by the agreement, they acknowledged at the time that the new restrictions were limited and scientists could create a map of her genome using already available data on HeLa cells.
Lawrence Lacks said that as executor of her estate he never signed off on that agreement and told NIH he didn't want the database created. He said the relatives on the board were not legally allowed to make decision on behalf of his mother's estate. Jerri Lacks, one of the family members on the board, said earlier this week that she did not agree with many of Lawrence Lacks' assertions, but she and other family members declined to comment further.
Ron Lacks said his father would like to see that agreement renegotiated.
Burklow said in his statement that the NIH was trying to help the family have more control over use of the HeLa cells.
"Without those discussions, initiated by NIH and facilitated by Rebecca Skloot and Dan Ford, the HeLa sequence would have been available without restriction to anyone," Burklow said. "Our desire was to respect the family's interest in confidentiality and privacy, and to recognize the contributions of Henrietta Lacks and her descendants."
Lawrence Lacks said Skloot represented the family before the NIH without his permission and also raised questions about a foundation she created to help the family. He and other family members also said she didn't accurately portray the family in the book.
Crown Publishing Group, which published the book, said Skloot provided the manuscript to members of the Lacks family for comment and corrections that were put into the book. The statement didn't specify which members saw the book, but said that Lawrence Lacks participated in meetings and interviews with Skloot. Lawrence Lack's son Ron said Skloot spent only an hour with his father and late mother.
"The veracity of the book, which has brought heightened awareness to the important contributions of HeLa cells to medicine and modern science, has not been challenged in the seven years since its initial publication in February 2010," the Crown Publishing statement said. "In the subsequent years, numerous members of the Lacks family have participated in interviews and public events in support of the book and of the need to tell the story of Henrietta Lacks."
Members of the Lacks family said they would like compensation for the use of Henrietta Lacks' cells. Two of her sons have debilitating illnesses and can't afford proper care, said Alfred Lacks Carter, Henrietta Lacks' grandson and Lawrence Lacks' nephew. They would like to set up a foundation to start a school for kids who want to study science and math.
They don't want to disrupt research, they said, but they want more say in it — as well as compensation for Henrietta Lacks' contributions.