Donna  Spruijt-­‐Metz,  PhD  MFA  

   Director,  USC  mHealth  Collaboratory  

Center  for  Economic  and  Social  Research  Associate  Professor  Preven=ve  Medicine  and  Psychology  

Director,  Responsible  Conduct  in  Research,  USC  Keck  School  of  Medicine  dmetz@usc.edu  

USC  CTSI  Ethics  Forum  September  10  2014  

The  Havasupai  Tribe  versus    Arizona  State  University  

Gene7cs,  Consent,  and  Communi7es    

The  Havasupai  people  (people  of  the  blue-­‐green  waters)  have  lived  in  the  Grand  Canyon  

for  at  least  the  past  800  years  

•  ~  650  people  •  In  1989,  members    approached  ASU  to  learn  why  the  incidence  of    

diabetes  within  their  community  was  increasing.    •  Therese  Markow,  a  genePcist  at  ASU,  took  on  the  study.    •  ~  100  tribal  members  signed  a  broad  consent  document  to  “study  

the  causes  of  behavioral/medical  disorders”    •  Most  of  them  had  not  completed  high  school,  and,  for  many,  

English  was  a  second  language    •  All  believed  that  they  were  donaPng  blood  solely  for  the  purpose  of  

looking  for  a  link  to  diabetes  to  improve  the  health  in  their  community    

•  The  genePc  link  to  diabetes  ASU  was  looking  for  was  not  found    •  Research  conPnued  into  medical  disorders  without  seeking    

addiPonal  consent  •  Other  ASU  researchers  also  uPlized  the  Havasupai  samples  for  their  

work  and  published  papers  about  inbreeding,  alcoholism,  and  the    origin  and  migraPon  of  the  tribe  from  Asia.    

Havasupai  Indian  Tribe  Journey  

•  hXp://www.nyPmes.com/video/2010/04/21/us/1247467672743/blood-­‐journey.html    

What  does  this  teach  us?  •  What  was  the  meaning  of  the  consent  that  the  Havasupai  provided?  •  What’s  the  harm—when  genePc  data  are  derived  from  samples  that  

have  been  voluntarily  provided  to  researchers  for  another  purpose?  •  What  are  the  interests  of  the  tribe  (disPnct  from  its  members’  

interests)    –  how  can  we  solicit  feedback  so  that  we  can  know  them?  –  how  can  and  should  they  be  protected?  

•  What  kinds  of  harms  tend  to  be  under-­‐emphasized  in  our  current  IRB  review?  

•  What  should  subjects  be  told  about  future  research  with  anonymized  samples?  

•  What  are  the  implicaPons  of  the  ASU-­‐Havasupai  case  for  scienPsts  conducPng  community-­‐based  research  in  a  diverse  urban  secng  like  Los  Angeles?  

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