Henrietta Lacks Enhancing Cancer Research Act, backed by Maryland lawmakers, is signed by President Trump

President Donald Trump signed a bill Tuesday inspired by the late Henrietta Lacks, a Baltimore County woman whose cells were used for medical research without her consent.

The Henrietta Lacks Enhancing Cancer Research Act requires the federal government to publish a report on government-funded cancer research trials, including the amount of participation by underrepresented populations and describing the barriers to participation.

The U.S. Senate and House of Representatives approved the bill in December before it headed to Trump’s desk to be signed about two weeks before he leaves office.

Henrietta Lacks died from cancer in 1951, but her legacy lives on, because her cells were “immortal,” and thus have been used in decades of research on AIDS, leukemia, and even COVID-19 -- but without her informed consent. (Emw // Wikimedia Commons)

The late U.S. Rep. Elijah Cummings, a Baltimore Democrat, championed the bill before his death in 2019. Cummings was worried about the lack of participation by people of color in clinical trials for cancer research.

Rep. Kweisi Mfume, who succeeded Cummings in the 7th District, took up the cause in the House. Maryland’s U.S. senators, Chris Van Hollen and Ben Cardin, supported it in the Senate. Other Maryland members of Congress, including Rep. C.A. Dutch Ruppersberger, Rep. John Sarbanes and Rep. David Trone, also supported the bill.

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“The debt of gratitude we owe Henrietta Lacks will never be fully repaid,” said Van Hollen, who sponsored the act in the Senate, in a news release. “But we can work to ensure that Americans know of her contributions to medical research and of the countless lives her cells saved, while also fighting to root out the disparities communities of color face in our health system.”

[ Q&A: Could the Henrietta Lacks case happen today? ]

Lacks’ eldest son, Lawrence Lacks Sr., said his family is “overcome with joy” and thanked Van Hollen for his continued efforts to honor his mother.

“This law builds upon her legacy and the global impact of her HeLa cells by ensuring equitable access to advancements in cancer treatment for all people,” Lacks said in a news release. “She truly is the Mother of Modern Medicine, and my family is proud that her contributions are now rightfully being honored as the world celebrates Henrietta Lacks’ centennial year.”

Lacks, who lived in Turner Station, was treated at Johns Hopkins Hospital for cervical cancer, and died from the disease in 1951. Without her knowledge or consent, doctors took her cancer cells and used them for medical research.

Henrietta Lacks, who lived in Turner Station, was treated at Johns Hopkins Hospital for cervical cancer. She died from the disease in 1951. (Courtesy Dr. Howard Jones)

The resulting HeLa line of cells has proved crucial to scores of medical researchers, including moneymaking medical advancements. Lacks’ family went for decades without knowing about the research or receiving any apologies or compensation. Only in recent years has Lacks’ contribution been acknowledged and celebrated.

Lacks’ case is one of many that contribute to distrust of medical institutions, particularly among Black communities that have been victimized.

Baltimore Sun reporter Pamela Wood contributed to this article.