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Collaborations with Genetic Researchers

Some tribes have formed collaborations with genetic researchers to support and participate in research studies.  As one Navajo scholar, Dr. Lee Bitsoi describes, “I tell my non-Native colleagues at Harvard and beyond that we’re not anti-science.  We [Native Americans] merely want research conducted on our terms” (Navajo Times 2011).  Researchers are becoming sensitive to the issues raised by Native Americans.  To address those issues, more studies are being designed to incorporate community-based participatory research (CBPR) practices that include community engagement and input into the research process.  This section briefly highlights several examples of research studies that may eventually benefit communities.

In 2003, the Salt River Pima-Maricopa Indian Community (SRPMIC) contributed $5 million to a genetics research institute, the Translational Genomics Research Institute (TGen) in Arizona. The tribe and TGen have formed a partnership for conducting medical genetics research on diabetes and other diseases (TGen 2003).  The partnership created an environment in which tribal members and researchers can work together to address research questions.

In Mexico, the National Institute for Genomic Medicine (INMEGEN) was established in 2004 to “carry out disease-related genomic studies that will address national health problems” and to study the genomic diversity of the Mexican population (Seguin et. al 2008).  Researchers at INMEGEN have also been involved in community engagement with Indigenous communities in Mexico to educate people about genetic research, answer questions, and carry out discussions with community members and leaders.  Through these engagement efforts, researchers have trained local university students to collect samples and worked with people to translate the research goals into the local Indigenous languages.  INMEGEN has also provided extra funding and time to ensure that proper informed consent is achieved for all research participants; through this system, consent is obtained at three levels: from the individual, the local community, and the state (Jacobs et al, 2010).  The INMEGEN example can provide some insight for other tribes considering participation in research.

The Walking Forward program in South Dakota aims to help Native American cancer patients better understand cancer treatment options and to educate the community about cancer screening to reduce cancer disparities in Native Americans.  A component of the Walking Forward program incorporates a genetic research study on a gene thought to be associated with response to radiation therapy; additionally, Walking Forward was involved in enrolling participants into a clinical trial for radiation therapy (Kanekar et al, 2009).  Through community engagement and trust building, Walking Forward has created a CBPR program to work with community members to incorporate community values into the research program.

The Pharmacogenomics Research Network (PGRN) is a nationwide collaboration of scientists who are studying the effects of genes on a person’s response to a prescription drug.  Pharmacogenomics is the study of pharmacology (“pharma-“), or drug responses, with genomic information (“-genomics”).  The University of Washington recently founded the Northwest-Alaska PGRN (NWA-PGRN) to address pharmacogenomics research in American Indians and Alaska Native populations.  NWA-PGRN works to identify barriers to research and health care, supports community-university partnerships, assesses the quality of scientific research and pharmacological testing, identifies methods to address adverse drug reactions, and engages in discussions to assess whether pharmacological research is benefiting the community. 

How Do We Decide?

A Guide for American Indian/Alaska Native Communities

The interactive decision guides provide a set of interactive questions to help you reflect on your feelings regarding research. Read More