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Havasupai Tribe vs. Arizona Board of Regents

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by

Takmela Rahman

on 27 November 2013

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Transcript of Havasupai Tribe vs. Arizona Board of Regents

Havasupai Tribe vs. Arizona Board of Regents
Havasupai Tribe
1989 - Two members of the Havasupai tribe asked Arizona State University for help
Research Guidelines
Carletta Tilousi
Member of the tribe who attended a conference in 2003
Research other than diabetes
Schizophrenia
Inbreeding
Migration
Other research topics were taboo for the Havasupai tribe
More general
information on diabetes
Blood samples to determine what diabetes
consists of and why
people become susceptible
to it
Why was the incidence
of diabetes so high among
the Havasupai tribe?
Settled in a remote part of the Grand Canyon
Isolated from others
One of the highest incidences of Type II Diabetes in the world
What the tribe wanted to find out
Why were there such high incidence rates of diabetes?
What could be done to decrease these rates?
What were researcher Therese Markow and other researchers hoping to gain from the research?
2004 - Lawsuit filed against Markow and Arizona Board of Regents
Official reasons behind lawsuit:
Lack of informed
consent from those
who cannot give
consent
Fraud and information selectively hidden from subjects
Cause of distress among the tribe
Conversion
Civil rights violation
Negligence
2010 - Settled in Arizona Court of Appeals
Tribe won $ 700,000 as compensation for use of their blood samples
Blood samples returned
Helped the Havasupai understand their situation better
No legal precedent was ever set by this case because it was settled as an out-of-court case
Issues raised by case
Informed consent
Human migration studies
Stigmatization
Access to medical records
Identification
Control of samples
Henrietta's cells were taken and used for countless research experiments as well
Should her family have been compensated for the misuse of her cells?
References
http://genetics.ncai.org/case-study/havasupai-Tribe.cfm
http://gazette.jhu.edu/2010/07/06/legal-ethical-framework-sought-for-human-tissue-research/
http://www.nytimes.com/2010/04/22/us/22dna.html?pagewanted=all&_r=1&
http://www.whoownsyourbody.org/havasupai.html
http://www.azregents.edu/abouttheboard/default.aspx

http://grandcanyonhistory.clas.asu.edu/sites_adjacentlands_havasupaireservation.html
http://fineartamerica.com/featured/havasu-falls-david-wagner.html
http://www.phoenixmag.com/lifestyle/200811/arizona-s-broken-arrow/5/
Takmela S. Rahman
Full transcript