,i  #aafth ,,congress  #ast ,session    
,h4 ,r4 #aiff  ,,in ,,the ,,house ,,of  
,,representatives  ,march #bh1 #bjai,mr4
 ,cummings 7for himself1 ,mr4 ,sarbanes1
 and ,mr4 ,ruppersberger7 introduced the
 following bill2 which was referred to  
the ,committee on ,energy and ,commerce1
 and in addition to the ,committees on  
,armed ,services1 and ,veterans'        
,affairs1 for a period to be            
subsequently determined by the ,speaker1
 in each case for consideration of such 
provisions as fall within the           
jurisdiction of the committee concerned 
,a ,,bill  ,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 trials4  #a4 ,short title ,this
 ,act may be cited as the ,henrietta    
,lacks ,enhancing ,cancer ,research ,act
 of #bjai4  #b4 ,findings ,congress     
finds as follows3  7#a7 ,only a small   

percent of patients participate in      
cancer clinical trials1 even though most
 express an interest in clinical        
research4 ,there are several obstacles  
that restrict individuals from          
participating including lack of         
available local trials1 restrictive     
eligibility criteria1 transportation to 
trial sites1 taking time off from work1 
and potentially increased medical and   
nonmedical costs4 ,ultimately1 about #a 
in #e cancer clinical trials fail       
because of lack of patient enrollment4  
7#b7 ,groups that are generally         
underrepresented in clinical trials     
include racial and ethnic minorities and
 older1 rural1 and lower-income         
individuals4  7#c7 ,henrietta ,lacks1 an
 ,african-,american woman1 was diagnosed
 with cervical cancer at the age of #ca1
 and despite receiving painful radium   
treatments1 passed away on ,october #d1 
#aiea4  7#d7 ,medical researchers took  
samples of ,henrietta ,lacks' tumor     
during her treatment and the ,he,la cell

 line from her tumor proved remarkably  
resilient4  7#e7 ,he,la cells were the  
first immortal line of human cells4     
,henrietta ,lacks' cells were unique1   
growing by the millions1 commercialized 
and distributed worldwide to            
researchers1 resulting in advances in   
medicine4  7#f7 ,henrietta ,lacks'      
prolific cells continue to grow and     
contribute to remarkable advances in    
medicine1 including the development of  
the polio vaccine1 as well as drugs for 
treating the effects of cancer1         
,,hiv_/,,aids1 hemophilia1 leukemia1 and
 ,parkinson's disease4 ,these cells have
 been used in research that has         
contributed to our understanding of the 
effects of radiation and zero gravity on
 human cells4 ,these immortal cells have
 informed research on chromosomal       
conditions1 cancer1 gene mapping1 and   
precision medicine4  7#g7 ,henrietta    
,lacks and her immortal cells have made 
a significant contribution to global    
health1 scientific research1 quality of 

life1 and patient rights4  7#h7 ,for    
more than #bj years1 the advances made  
possible by ,henrietta ,lacks' cells    
were without her or her family's        
consent1 and the revenues they generated
 were not known to or shared with her   
family4  7#i7 ,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 
trust2 promoting ethical research that  
benefits all individuals1 including     
traditionally underrepresented          
populations2 and protecting research    
participants4  #c4 ,,gao study on       
barriers to participation in federally  
funded cancer clinical trials by        
populations that have been traditionally
 underrepresented in such trials  7a7   
,in general ,not later than #b years    
after the date of enactment of this     
,act1 the ,comptroller ,general of the  
,united ,states shall--  7#a7 complete a
 study that-- 7,a7 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  
trials1 and identifies challenges1 if   
any1 in implementing such actions2 and  
7,b7 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  
trials2 and  7#b7 submit a report to the
 ,congress on the results of such study1
 including recommendations on potential 
changes in practices and policies to    
improve participation in such trials by 
such populations4  7b7 ,inclusion of    
clinical trials ,the study under        
subsection 7a77#a7 should include review
 of cancer clinical trials that are     
largely funded by ,federal agencies1    
including the ,national ,institutes of  
,health1 the ,department of ,defense1   

the ,department of ,veterans ,affairs1  
the ,agency for ,health ,research and   
,quality1 the ,food and ,drug           
,administration1 and such other ,federal
 agencies as the ,comptroller ,general  
of the ,united ,states may identify4