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Community Conversation on Genetics – April 3, 2009, Shiprock, NM
The Mountain States Genetics Regional Collaborative Center (MSGRCC), in collaboration with:

  • Diné College of Shiprock, NM
  • The University of New Mexico School of Medicine, Department of Pediatrics
  • The University of Arizona
  • The National Newborn Screening and Genetics Resource Center
  • The National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups
  • The Heath Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch

hosted the first Community Conversation on Genetics with the Navajo People in Shiprock, New Mexico in April.  The meeting, which was planned and organized by Murray Brilliant, PhD, Professor of Pediatrics and Molecular & Cellular Biology with the University of Arizona, featured presentations on genetics, newborn screening, genetics and the health of the Navajo People, promise and problems of genetic research, and the future of genetics and the Navajo People.

The Navajo are one of the largest Native American populations and have withstood many challenges to their beliefs and culture.  Among the genetic disorders with increased frequency among the Navajo are: Severe Combined Immunodeficiency, Oculocutaneous albinism type 2, Microvillous Inclusion Disease, Athabaskan Brain Stem Dysgenesis, Navajo hepatoneuropathy, Poikiloderma with Neutropenia, and a unique Oro-Facial-Digital syndrome. The Navajo represent a unique population that stands to benefit from modern genetics; however, genetics remains a very controversial subject among the Navajo.

Currently most American Indian governments have instituted a moratorium on genetic studies.  The controversy over genetics among the Native Americans has complex roots. These include: the Human Diversity Project that suggested that many tribes were on the way to extinction; misuse of Havasupai DNA samples for purposes not explicitly approved by the tribe leading to perceived social harm; lack of direct benefit to the community, exemplified by years of diabetes research among the Pima People during which diabetes rates skyrocketed; a demonstrable lack of access to research results; a lack of partnership; and rewards to researchers, not shared by subjects.

 

A project is currently underway within the MSGRCC that seeks to promote dialogue on genetics and newborn screening with the Navajo people.  Using community conversations, MSGRCC is developing and implementing a mechanism for dialogue to promote understanding of principles of genetics and newborn screening among tribal members, and to foster an understanding of the views of tribal members on genetic testing and newborn screening among genetics and public health providers and community educators.  Additional community conversations are planned in the coming years.

 

The MSGRCC is supported by cooperative agreement #U22MC10761with the United States Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau, Genetic Services Branch