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."

Lawrence Lacks asserted Monday that the family wanted compensation from Johns Hopkins for its use of his mother's cells. His statements come as an HBO movie about his mother's life starring Oprah Winfrey is scheduled for release in April. Lacks' story garnered national attention after Rebecca Skloot wrote a best-selling book, "The Immortal Life of Henrietta Lacks."

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.

Skloot could not be reached for comment Friday.

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.

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Henrietta Lacks family calls for inquiry into Johns Hopkins' use of her cells - Baltimore Sun

February 17, 2017 The expansion and formation of T memory cells over time after infection or vaccination. Credit: The lab of John Wherry, PhD, Perelman School of Medicine, University of Pennsylvania

For most vaccines to work the body needs two cell types - B cells and T helper cells - to make antibodies. B cells are the antibody factories and the T helper cells refine the strength and accuracy of antibodies to home and attack their targets. A technique that identifies these helper immune cells could inform future vaccine design, especially for vulnerable populations.

Flu vaccines work by priming the immune system with purified proteins from the outer layer of killed flu viruses. An antibody is a protein that recognizes a unique pathogen molecule called an antigen that is specific for a particular strain. Antibodies bind to their targets with precision in the best of circumstances. In doing so, the antibody blocks a harmful microbe from replicating or marks it to be killed by other immune cells.

The level of antibodies in the blood tells immunologists how well a vaccine is working, specifically, how many antibodies are made and how strongly they disable microbes. The relatively scarce circulating T follicular helper cells, or cTfh for short, are key to antibody strength. Without Tfh, effective antibodies cannot be made, yet very little is known about cTfh cells in humans after vaccination.

Now, a team led by researchers from the Perelman School of Medicine at the University of Pennsylvania has found a way to identify the small population of cTfh present in the blood after an annual flu vaccine to monitor their contribution to antibody strength. They published their findings in Science Immunology this week. The studies, led by Ramin Herati, MD, an instructor of Infectious Disease, used high dimensional immune-cell profiling and specific genomic tests to identify and track these rare cells over time.

"The poor understanding of cTfh function is, in part, because these cells spend most of their time waiting in lymph nodes for the next infection, and not circulating in the blood," said senior author E. John Wherry, PhD, a professor of Microbiology and director of the Institute of Immunology at Penn. "To get a handle on how well these cells are doing their job following vaccination, we have needed a way to measure their responses without gaining direct access to lymph nodes. Because of the central role of circulating T follicular helper cells in antibody development, new vaccine development strategies will benefit from a better understanding of the properties of these essential cells in the immune response."

Molecular Bar Codes

Every T cell has a unique receptor on its outer surface. After receiving a vaccine, the result is one T cell with this unique bar code of sorts that replicates, making thousands of clones with identical copies of the same bar code. After vaccination this expansion of T cells dies down and a few clones remain behind. These memory cells wait it out in lymph nodes and other organs for the next time the infection or vaccine enters the body. These clones can then be called into action to protect the individual or help boost the vaccine immunity.

In the current study, the team was able to track circulating helper T cells because the unique bar code they possessed is specific to the strains used in an annual flu vaccine. Wherry and colleagues traced antibody production in 12 healthy subjects, aged 20 to 45 for three years from 2013 to 2105. The circulating subset of helper follicular T cells expressed different transcription factors and cytokinesBcl-6, c-Maf, and IL-21 - compared to other T-cell subpopulations in the blood. The number of the cTfh cells sharply increased at seven days after a subject received a flu shot.

Repeated vaccination of the study participants brought back genetically identical clones of cTfh cells in successive years, indicating robust cTfh memory to the flu vaccine. These responses are a proxy for specific antibodies to the flu vaccine each year. In addition, these results measure the dynamics of vaccine-induced cTfh memory and recall over time, allowing investigators to monitor the key human-vaccine-induced cTfh responses and gain insights into why responses to flu vaccines are suboptimal in many people.

The ability to track these cTfh responses in the blood, instead of accessing lymph nodes in humans, allows for real-time monitoring of key cellular mechanisms involved in vaccination. Such knowledge should allow further optimization of vaccines for hard-to-treat diseases like the flu, but also HIV, and other infections in which inducing potent vaccines has been a challenge.

"These cTfh are a missing piece of being able to truly monitor and predict their ability to induce the desired magnitude and quality of immune memory, and therefore protection by vaccines," Wherry said. The team next intends to look at elderly populations in which vaccines are not as effective and ask what role cTfh cell populations play in that part of the human population.

Explore further: Reservoir divers: Select antiviral cells can access HIV's hideouts

More information: "Successive annual influenza vaccination induces a recurrent oligoclonotypic memory response in circulating T follicular helper cells," Science Immunology, immunology.sciencemag.org/lookup/doi/10.1126/sciimmunol.aag2152

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Team tracks rare T cells in blood to better understand annual flu vaccine - Medical Xpress