“My mother would be so proud that her cells saved lives,”

“She’d be horrified that Johns Hopkins profited while her family to this day has no rights.”

These were words from a statement from eldest son of Henrietta Lacks, Lawrence Lacks, who is seeking compensation for the use of his mother’s cells in medical research.

The Baltimore Sun reported:

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.

However, John Hopkins responded saying:

…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.”

If Lawrence’s claims are true then the institution and medical field in general should through moral obligation make sure that the Lacks’ family are taken care of!

Read more in the Baltimore Sun.