116TH CONGRESS 

2D SESSION H. R. 1966 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 
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•HR 1966 EH

1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Henrietta Lacks En3 hancing Cancer Research Act of 2019’’. 

4 SEC. 2. FINDINGS. 

5 Congress finds as follows: 

6 (1) Only a small percent of patients participate 

7 in cancer clinical trials, even though most express an 

8 interest in clinical research. There are several obsta9 cles that restrict individuals from participating in10 cluding lack of available local trials, restrictive eligi11 bility criteria, transportation to trial sites, taking 

12 time off from work, and potentially increased med13 ical and nonmedical costs. Ultimately, about 1 in 5 

14 cancer clinical trials fail because of lack of patient 

15 enrollment. 

16 (2) Groups that are generally underrepresented 

17 in clinical trials include racial and ethnic minorities 

18 and older, rural, and lower-income individuals. 

19 (3) Henrietta Lacks, an African-American 

20 woman, was diagnosed with cervical cancer at the 

21 age of 31, and despite receiving painful radium 

22 treatments, passed away on October 4, 1951. 

23 (4) Medical researchers took samples of Hen24 rietta Lacks’ tumor during her treatment and the 

25 HeLa cell line from her tumor proved remarkably 

26 resilient. 
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•HR 1966 EH

1 (5) HeLa cells were the first immortal line of 

2 human cells. Henrietta Lacks’ cells were unique, 

3 growing by the millions, commercialized and distrib4 uted worldwide to researchers, resulting in advances 

5 in medicine. 

6 (6) Henrietta Lacks’ prolific cells continue to 

7 grow and contribute to remarkable advances in med8 icine, including the development of the polio vaccine, 

9 as well as drugs for treating the effects of cancer, 

10 HIV/AIDS, hemophilia, leukemia, and Parkinson’s 

11 disease. These cells have been used in research that 

12 has contributed to our understanding of the effects 

13 of radiation and zero gravity on human cells. These 

14 immortal cells have informed research on chromo15 somal conditions, cancer, gene mapping, and preci16 sion medicine. 

17 (7) Henrietta Lacks and her immortal cells 

18 have made a significant contribution to global 

19 health, scientific research, quality of life, and patient 

20 rights. 

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

22 possible by Henrietta Lacks’ cells were without her 

23 or her family’s consent, and the revenues they gen24 erated were not known to or shared with her family. 
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•HR 1966 EH

1 (9) Henrietta Lacks and her family’s experience 

2 is fundamental to modern and future bioethics poli3 cies and informed consent laws that benefit patients 

4 nationwide by building patient trust; promoting eth5 ical research that benefits all individuals, including 

6 traditionally underrepresented populations; and pro7 tecting research participants. 

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

9 FEDERALLY FUNDED CANCER CLINICAL 

10 TRIALS BY POPULATIONS THAT HAVE BEEN 

11 TRADITIONALLY UNDERREPRESENTED IN 

12 SUCH TRIALS. 

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

14 date of enactment of this Act, the Comptroller General 

15 of the United States shall— 

16 (1) complete a study that— 

17 (A) reviews what actions Federal agencies 

18 have taken to help to address barriers to par19 ticipation in federally funded cancer clinical 

20 trials by populations that have been tradition21 ally underrepresented in such trials, and identi22 fies challenges, if any, in implementing such ac23 tions; and 

24 (B) identifies additional actions that can 

25 be taken by Federal agencies to address bar-
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1 riers to participation in federally funded cancer 

2 clinical trials by populations that have been tra3 ditionally underrepresented in such trials; and 

4 (2) submit a report to the Congress on the re5 sults of such study, including recommendations on 

6 potential changes in practices and policies to im7 prove participation in such trials by such popu8 lations. 

9 (b) INCLUSION OF CLINICAL TRIALS.—The study 

10 under subsection (a)(1) shall include review of cancer clin11 ical trials that are largely funded by Federal agencies. 

Passed the House of Representatives December 9, 

2020. 

Attest: 

Clerk. 
116TH CONGRESS 

2D SESSION H. R. 1966 

AN ACT 

To direct the Comptroller General of the United 

represented in such trials. populations that have been traditionally underpation in federally funded cancer clinical trials by States to complete a study on barriers to partici-