The Havasupai tribe agreed to allow researchers to collect blood samples to study diabetes in 1990. However, in 2004 they discovered the samples were also used for studies on schizophrenia, inbreeding and migration without consent. The document outlines guidelines for ethical research with indigenous communities, including obtaining fully informed consent from both individual tribal members and the tribe, ensuring the community benefits, having cultural competence, and establishing true partnerships through ongoing consultation.

2. • 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?

3. • 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

4. • 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

5.  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.

6. The University of Arizona IRB protocols
A researcher must obtain the consent of a
tribal member as well as of their tribe, prior
to proceeding with any research proposal,
including one that conducts secondary
research. This tribal assent extends to
Urban Indians, and also for Indians who
live in rural areas.

7.  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

8. 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

9. • Respect
• Reciprocity
• Responsibility