Friday, October 28, 2011

Trust and Research in Indian Country

      I don't know what it is about today, but the topic of research seems to keep re-emerging in discussion topics.   As a full blooded Navajo woman, this topic presses my buttons on so many levels.  Which is why I feel the need to discuss it.  Aside from the personal and historical relationship I have with "research," I also have a professional relationship with "research."......I just needed to clarify that with you before hand, because its not a straight road from here.....
       While writing a literature review about barriers to health in Native American women, I found a lot of research data to be outdated by at least 10 to 15 years.  Which made my review difficult, because what I was reading didn't really reflect what was going on today.  For college students interested in reading research about what is going on in Indian Country, you will run into this. So where is all the current research?  It's no secret that there is a "common feeling among many tribal people that research has harmed American Indians and Alaskan Native people."..This is not just a feeling too..

Historic Distrust

  • Termination of government - to - government relationships with many tribes (1950's & 1960's)
  • Relocation to urban areas (1950's-1960's)
  • Sterilization without knowledge or permission (through 1970's)

Current Issues
  • Misuse of blood samples taken from tribal members by ASU (tribe told it would be used for a study on the genetics of diabetes..however blood samples were used for studies on schizophrenia, inbreeding, and possible migration patterns of the tribe's ancestors from Asia to America..(2004).
    The history of research in Indian country has not been a positive one....Now here is the kicker.....Why is research even important? With the many health disparities afflicting our tribes, how do we even begin to identify and address these issues, because many healthcare providers and community programs rely on research to justify their work.  If we stick to "all research does harm,"  how are the tribes going to justify community programs that support families and if the research is not current how are the healthcare providers going to know how to guide their practice when providing care in Native American communities?
     At the many conferences I attend, I am always hearing about how we need to shape our care to meet the needs of the population we are caring for...Research??..Anyone..The question then becomes, who does the research, how is the research used, and can we read and understand what the research means?  I can tell you will not find vary many Native Americans doing research...PhD's..etc..I'm not being an educated snob here by saying that, but seriously, you want to be at the tables where decisions are being made that affect your tribe, get educated.  Use it to your advantage...consider it another language...use it so you don't get taken advantage of...
      On that point, tribes are now developing or have developed regulatory policies and institutional structures to regulate research.  Which is a positive thing, because as soverign nations, we should be able to regulate research on our reservations.  Institutional Review Boards, Community Advisory Boards are all types of research committees who decide what type of research is ethical, safe, and will benefit the tribe..and a few other things, but I will let you look those up yourself...Now before you start reading the word "U.S. government formed" and decide to "doubt" the efficacy of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research..remember this is a group of scholars and policy-makers who basically wrote the "Belmont Report" (look it up!)..a set of ethics codes that guides the responsible conduct of research.  Basically..Respect for persons, beneficence, and justice.  It was drafted in 1979.  Federal Law mandates that all research conducted or funded by federal departments and agencies must follow the Protection of Human Subjects, meaning research involving human subjects must be approved and continuously monitored by (IRB's)..yes IHS has one. The down side to the IRB's I just stated, are that it is founded by Universities and community members at large. However, thanks to the Indian Self-Determination and Education Assistance Act of 1975 and Self-Governance, American Indian and Alaskan Native communities have the legal bases for regulating research as it relates to health and social issues.
              Basically, we have the means to develop our own research communities that support how research studies should be conducted.  Enforcing these laws is up to the tribe, but the National Congress of American Indian (NCAI) Policy Research Center (PRC) maintains a data base of tribal complaints that allows tribes to share information about "unethical" researcher conduct with other tribes. (Sahota,  Research Regulation in American Indian/Alaska Native Communities: Policy and Practice Considerations )

                My point in all of this is, as a healthcare professional I see the need for research, as a Navajo woman, we have to tread lightly in this area.  Rebuilding trust, mutual respect, and letting tribes be FULL partners in the research is vital.  Assuming that all research is untrustworthy and not taking an educated look at it, so that you can make your own decision as to whether or not it is best practice for allowing yourself to be volunerable.  As someone who has chosen to get an education, so that I may use that information to make changes for our tribes, it is extremely frustrating to encounter those who still avoid possible healthy practices to go by the wayside because government is attatched to it, rather then learning how to read research for themselves.  It's even more frustrating to continuesly hear the overabundence of complaints of how government makes these decisions for us.  Get out of your box and do something about it...Put yourself in a place to be heard, be on the committies that make these decisions.  I'm not saying be a politician, rather be an educated advocate.  Which is why there needs to be more Natives going to college and beyond. You have something to offer!
         Yet..Again..another reason why I love midwifery!

NCAI Policy Research Center link:

1 comment:

  1. "I just needed to clarify that with you before hand, because its not a straight road from here...." -

    My favorite line in this. It is very difficult to do reservation based research right now. The IRBs, if they exist are difficult, moreso than traditional university IRBs- which you also have to complete. The time to do the research is 6-18 months longer as you need approvals from the tribe to even begin and then after to publish.

    But it is essential that this work is done. So figuring out how to follow such a challenging road is key- thanks Nicole for this piece!