By Deborah Bailey
Special to the AFRO
Congress paid homage to a local hero this week with the passage of legislation named for Henrietta Lacks. The House of Representatives passed the “Henrietta Lacks Enhancing Cancer Research Act” in honor of the African-American woman from Turners Station, who died in 1951, at 31 years old from cervical cancer and is popularly referred to world-wide as the “Mother of Modern” medicine.
“Henrietta Lacks’ DNA has helped spur countless medical breakthroughs for years,” said Rep. Kweisi Mfume (MD-7) in introducing the bill this week.
“This bill honors her life legacy by working to make sure under represented communities are counted and protected in clinical trials,” Mfume stated.
According to the American Cancer Society, one in five clinical trials fail due to low enrollment of racial minorities. The Henrietta Lacks Enhancing Cancer Research Act directs the US Government Accountability Office (GAO) to investigate actions across federal agencies to address barriers to participation by under-represented populations in federally funded cancer clinical trials. The bill requires GAO to provide policy options to address these disparities and create more racially inclusive and government sponsored/supported trials.
Mfume underscored “exploitive and deceptive medical practices” resulting in low African-American representation in and distrust of government sponsored/related medical research in America. The legislation was originally introduced in March 2019 by Mfume’s predecessor, the late Rep. Elijah Cummings, who died in October of that same year.
Mfume acknowledged Cummings’ strong belief in the need for legislation to intervene and change the pattern of reluctance, distrust and under-representation in government funded research. The extraction of Henrietta Lacks’ cells without her consent and the inhumane treatment of African-American men during the Tuskegee Syphilis Study motivated Cummings to craft the original legislation.
Negative consequences of the infamous 40-year Tuskegee Study, conducted by the United States Public Health Service (USPHC) 1932-1972, continue to surface nearly 50 years later in the low enrollment of African Americans and other persons of color in recent Covid-19 vaccine trials, Mfume said.
“I believe the most profound reason for low enrollment begins and lies with the horrific Tuskegee Study of 1972 in which hundreds of unwitting Black men suffered and died needlessly as part of an unethical and inhumane medical experiment,” he said.
“We appreciate Congressman Kweisi Mfume, for bringing The Henrietta Lacks Enhancing Cancer Research Act, H.R. 1966 to the floor of the U.S. House of Representatives” said Ron and Hope Lacks, descendants of Henrietta Lacks.
“Our hope is for a new beginning and a change in the way that black and brown people have been treated by the medical institutions and with this bill, hopefully, more minorities will start to participate in clinical trials,” they added.
Lacks was being treated, in 1951, at Johns Hopkins Hospital where cell samples were taken from her body without her knowledge or consent. Lacks’ cells miraculously survived, continued to multiply outside her body and have since contributed to the development of the polio vaccine, cancer and HIV treatments, Parkinson’s disease and countless medical advances. The immortal HeLa cell line is well known in the medical community and is used world-wide in government and private industry research. The Lacks family was not made aware of the existence of the HeLa Cell line for years after Henrietta’s death.
“Hopefully this legislation can be part of proving to Black people that we are not just an experiment to benefit of others,” Ron Lacks said. “We look forward to seeing a bridge between our community and medical research institutions.”