Maryland lawmakers introduced a bill Monday to posthumously award Henrietta Lacks a Congressional Gold Medal for her contributions to medical research through her HeLa cells.
The Henrietta Lacks Congressional Gold Medal Act, introduced by Maryland Rep. Kweisi Mfume and Sen. Chris Van Hollen, would honor Lacks for her contribution to life-saving research, even though her cell samples were taken without her consent.
Who is Henrietta Lacks?
Lacks was born in the 1920s in Virginia. She later moved to Maryland, and in her 30s, she discovered that she had cervical cancer.
She visited a doctor for treatment at the Johns Hopkins Hospital in Baltimore. At the time, it was one of the only hospitals that would help African Americans, according to the bill.
During her treatment, a doctor took samples of Lacks’ cervical tissue without her consent. Lacks’ cancer progressed, and she died months later, leaving behind a husband and five kids.
Despite her death, Lacks’ cells were reproduced indefinitely in a lab and used in various biomedical research projects. Her cells, which became known as HeLa cells, were found to be incredibly durable and grew at a fast rate.
Research involving HeLa cells has led to the discoveries of treatments for illnesses such as polio, HIV/AIDS, leukemia and Parkinson’s disease, according to the bill.
In 2013, the National Institutes of Health (NIH) gave the Lacks family control over how the findings from the HeLa cells could be used. In 2024, Johns Hopkins University also acknowledged Lacks’ contributions with a Henrietta Lacks Building in East Baltimore.
Controversy over informed consent
Henrietta Lacks’ cells were used for scientific and medical research without her or her family’s permission.
According to Johns Hopkins Medicine, in the 1950s, the collection and use of Lacks’ cells in research was an acceptable and legal practice. However, researchers must now have the patient’s consent.
In 2013, Johns Hopkins formalized an agreement with Lacks’ family and the National Institutes of Health (NIH) that requires scientists and medical researchers to get permission to use the HeLa cells.
However, in the 1950s, according to Johns Hopkins, there was no established consent from cell or tissue donors. There were also no local or national regulations on the use of cells in research.
Now, there are strict standards of informed consent for the use of cells or donations for research.
The Lacks family has sued several pharmaceutical companies, including the billion-dollar biotech companies Ultragenyx and Thermo Fisher Scientific, over using HeLa cells without consent.
In 2023, Lacks’ family settled with Thermo Fisher. The terms were confidential. In May 2024, a judge rejected Ultragenyx’s attempt to dismiss a lawsuit filed by the family.
Lawmakers highlight importance of honoring Henrietta Lacks
So far, the bill has received support from about 27 lawmakers and from the Henrietta Lacks Initiative and the Henrietta Lacks Legacy Group.
“Her cells unlocked a breakthrough in medical research, leading to treatments and cures that are bettering people’s lives to this day,” Sen. Van Hollen said. “But Mrs. Lacks never consented to the use of her cells – nor did she receive rightful credit for the monumental contributions she made.”
According to Congressman Mfume, honoring Lacks has become even more important following the election of President Trump.
“HeLa cells have altered the future of medical science, and the world continues to benefit from Mrs. Lacks’ contributions and sacrifice,” Mfume said.
The administration has argued that DEI programs interfere with merit-based hiring and other opportunities and that eliminating DEI programs will help the federal government cut costs.