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[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1966 Enrolled Bill (ENR)]

        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.
        (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.
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