2010 Conference - Ethical Issues in Studying Minorities and Indigenous Peoples (Luna-Firebaugh)
• In 1990 the Havasupai agreed to allow University researchers to obtain blood samples to study the genetics of diabetes.• Then, in 2004, the nation discovered that researchers had used these samples to research schizophrenia, inbreeding and migration patterns, without the tribe’s consent.• What could be done?
• Over the years research has proceeded from a position of benefit to the researcher and the greater community• Little consideration was generally given to direct benefit to the studied community• Under this model, the benefit must accrue also to the studied community – Development of research skills – Share in the grant proceeds – Co-authorship
• Observe Proper Protocol• Strive for Cultural Competence• Aim for a True Partnership• Look to guidance from existing policies• The State of Arizona Protocols – The University of Arizona IRB protocols – Guidelines for Conducting Research in Tribal Communities – Guidance from the International Community
All Executive Branch agencies shall develop and implement tribal consultation policies… All Executive Branch agencies shall designate a responsible staff member to guide the agency’s implementation of the tribal consultation policy and to act as the principle point of contact for tribal issues. All Executive Branch agencies shall review their tribal consultation policies each year and provide them to the Arizona Commission of Indian Affairs and Arizona’s tribal leaders.
The University of Arizona IRB protocolsA researcher must obtain the consent of atribal member as well as of their tribe, priorto proceeding with any research proposal,including one that conducts secondaryresearch. This tribal assent extends toUrban Indians, and also for Indians wholive in rural areas.
Proposals for research on American Indian reservations must demonstrate that research procedures are appropriate given the laws and culture of the tribal nation in which the research will be conducted and that the researcher has established the appropriate relationships within the tribal jurisdiction in which he or she intends to work, and honor the autonomy and dignity of all persons and embody the principles of respect for persons, beneficence, and justice
A covenant must be established that ensures Equity of partners Dedication to the promotion of harmony/stability Confidentiality of information and resources, Continual dialogue and mutual review, supported by independent monitoring. Development, strengthening, and support of local (indigenous and non-indigenous) educational, health, research, and NGO’S Establishment of local autonomy and control over all aspects of the projects