H. R. 1966 

One Hundred Sixteenth Congress 

of the 

United States of America 

AT THE SECOND SESSION 

Begun and held at the City of Washington on Friday, 

the third day of January, two thousand and twenty 

An Act 

To direct the Comptroller General of the United States to complete a study on 

barriers to participation in federally funded cancer clinical trials by populations 

that have been traditionally underrepresented in such trials. 

Be it enacted by the Senate and House of Representatives of 

the United States of America in Congress assembled, 

SECTION 1. SHORT TITLE. 

This Act may be cited as the ‘‘Henrietta Lacks Enhancing 

Cancer Research Act of 2019’’. 

SEC. 2. FINDINGS. 

Congress finds as follows: 

(1) Only a small percent of patients participate in cancer 

clinical trials, even though most express an interest in clinical 

research. There are several obstacles that restrict individuals 

from participating including lack of available local trials, 

restrictive eligibility criteria, transportation to trial sites, 

taking time off from work, and potentially increased medical 

and nonmedical costs. Ultimately, about 1 in 5 cancer clinical 

trials fail because of lack of patient enrollment. 

(2) Groups that are generally underrepresented in clinical 

trials include racial and ethnic minorities and older, rural, 

and lower-income individuals. 

(3) Henrietta Lacks, an African-American woman, was 

diagnosed with cervical cancer at the age of 31, and despite 

receiving painful radium treatments, passed away on October 

4, 1951. 

(4) Medical researchers took samples of Henrietta Lacks’ 

tumor during her treatment and the HeLa cell line from her 

tumor proved remarkably resilient. 

(5) HeLa cells were the first immortal line of human cells. 

Henrietta Lacks’ cells were unique, growing by the millions, 

commercialized and distributed worldwide to researchers, 

resulting in advances in medicine. 

(6) Henrietta Lacks’ prolific cells continue to grow and 

contribute to remarkable advances in medicine, including the 

development of the polio vaccine, as well as drugs for treating 

the effects of cancer, HIV/AIDS, hemophilia, leukemia, and 

Parkinson’s disease. These cells have been used in research 

that has contributed to our understanding of the effects of 

radiation and zero gravity on human cells. These immortal 

cells have informed research on chromosomal conditions, cancer, 

gene mapping, and precision medicine. 
H. R. 1966—2 

(7) Henrietta Lacks and her immortal cells have made 

a significant contribution to global health, scientific research, 

quality of life, and patient rights. 

(8) For more than 20 years, the advances made possible 

by Henrietta Lacks’ cells were without her or her family’s 

consent, and the revenues they generated were not known 

to or shared with her family. 

(9) Henrietta Lacks and her family’s experience is fundamental to modern and future bioethics policies and informed 

consent laws that benefit patients nationwide by building 

patient trust; promoting ethical research that benefits all 

individuals, including traditionally underrepresented populations; and protecting research participants. 

SEC. 3. GAO STUDY ON BARRIERS TO PARTICIPATION IN FEDERALLY 

FUNDED CANCER CLINICAL TRIALS BY POPULATIONS THAT 

HAVE BEEN TRADITIONALLY UNDERREPRESENTED IN SUCH 

TRIALS. 

(a) IN GENERAL.—Not later than 2 years after the date of 

enactment of this Act, the Comptroller General of the United States 

shall— 

(1) complete a study that— 

(A) reviews what actions Federal agencies have taken 

to help to address barriers to participation in federally 

funded cancer clinical trials by populations that have been 

traditionally underrepresented in such trials, and identifies 

challenges, if any, in implementing such actions; and 

(B) identifies additional actions that can be taken by 

Federal agencies to address barriers to participation in 

federally funded cancer clinical trials by populations that 

have been traditionally underrepresented in such trials; 

and 

(2) submit a report to the Congress on the results of such 

study, including recommendations on potential changes in practices and policies to improve participation in such trials by 

such populations. 

(b) INCLUSION OF CLINICAL TRIALS.—The study under subsection (a)(1) shall include review of cancer clinical trials that 

are largely funded by Federal agencies. 

Speaker of the House of Representatives. 

Vice President of the United States and

President of the Senate.