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 funda-
mental 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 popu-
lations; 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 prac-
tices and policies to improve participation in such trials by 
such populations. 
(b) INCLUSION
OF CLINICAL TRIALS.—The study under sub-
section (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.