Blood in the Water
Blood in the Water
~ Katie Brown
The Havasu `Baaja, more commonly known by the name Havasupai, are the centuries-old guardians of sacred lands in and around the Grand Canyon. Most recently, however, they learned and taught us all a lesson in guarding something just as sacred – their own blood. In what can only be described 
as one more offense in an already long list that dates back more than 200 years, the mishandling of Havasupai blood samples came to light in 2003, and ended seven years later in April of 2010 with a victorious, albeit somewhat saddened and much wiser, tribe.
The people-of-the-blue-green-water placed their trust in an anthropologist from Arizona State University, John Martin, who had developed a relationship with the tribe in the 1960s, when two female tribe members approached him in 1989 asking for help with combating diabetes. Due to their geographic isolation, the restricted gene pool of the Havasupai leads to a high incidence of type-2 diabetes, and Martin felt a study of genetic factors and subsequent education of tribal members could stem some of the medical problems.
Martin introduced a colleague to the study and to the Havasupai, Therese Markow, who claimed an interest in solving the epidemic-like prevalence of diabetes. Markow’s involvement was anything but benevolent, and she quickly abused the samples given by participants, and their trust along with it.
Markow had doctoral students who collected blood samples in the Supai medical clinic secretly raid the clinic’s medical files by night in hopes of finding high incidences of schizophrenia. She applied for and won hundreds of thousands of dollars in grants during the 1990’s for herself and on behalf of her students/assistants, at times citing a 7% incidence of schizophrenia among the Havasupai tribe, which is seven times higher than the national average. It is a number that she pulled out of thin air, and has not been confirmed by anyone or any other organization involved in schizophrenia studies. In fact, her research was frustrated when the blood samples showed no unusual signs of mental illness.
More important than the harmful and stigmatizing nature of her claims that “everyone is crazy” in Supai, is the fact that uses other than diabetes research were never revealed to participating blood donors. According to the New Times, “23 academic papers, articles, and dissertations have been published using Havasupai blood as primary source material. Fifteen of those treatises focus on schizophrenia, inbreeding and migration, not diabetes.”
In the world of science ethics, informed consent is a term extremely important to any study involving human subjects, and there are typically safeguards in place to ensure and protect subjects’ rights, such as the university’s Institutional Review Board (IRB). However, in the case of the Havasupai, their consent forms never mentioned anything other than diabetes studies, and some people wonder if there was any real effort to ensure that the language and educational barrier was fully overcome (many tribe members barely speak English and/or have not finished high school). Did they understand what they were signing?
That question became obsolete once it was revealed by one assistant that most people donated blood without even signing a consent form, and Markow herself could not produce any signed forms, claiming that they had been lost. Even though a consent form existed at one time, its title and the title of the project submitted to the IRB were different, the former “Medical Genetics at Havasupai” and the latter “Schizophrenia in the Havasupai.” According to informed consent guidelines, the titles of the two should be identical. There was also a vow that no donors’ names would appear on the blood vials, a promise that was broken in several instances.
When Markow took a job at University of Arizona in the mid-1990s she took the blood samples with her, even though they were not to leave ASU. She sent samples to scientists around the nation for other studies, many of which were migration studies in which the secondary researchers neglected to seek tribal permission, which they never would have gotten. The Havasupai trace their origins to the sacred lands in the Grand Canyon and those beautiful blue-green waters to which they belong, so migration studies are inherently against their creation story and belief system. These studies were a blatant challenge to their identity after a history of challenges imposed since the arrival of Europeans, creation of the U.S. Government, appropriation of their lands, and subsequent decimation of their agricultural livelihood.
The New Times quoted Carletta Tilousi, a Havasupai member who led the tribe in their case against Arizona State University as saying, “Think of how devastating it would be to learn that you unknowingly gave your blood for studies that went against your entire belief system of origin. What’s really sad is that many people built their careers off the blood of these indigenous people.”
Tilousi was the lead plaintiff of about 45 in the case against the Arizona
Board of Regents, Michael Crow, president of ASU, and Arizona Attorney General Terry Goddard. Beginning in 2004, they fought a long, hard battle for over six years between federal and state court systems, and in April of this year came out victorious. The outcome included $700,000 to be distributed among the plaintiffs, as well as several joint projects between the Arizona Board of Regents and the Havasupai. These include funding for a high school, a new health clinic, and educational opportunities, such as scholarships.
The Havasupai victory is a symbol of hope among others who may feel taken advantage of, oppressed or abused. It represents a step forward economically, and gives them the recognition and respect they deserve as a people. Most important of all was the return of around 200 samples that remained of the original 400+ blood samples, many of which belong to people who have passed on. The returned blood means a full and proper burial for the deceased, so they can finally continue in peace on their journey to the spirit world beyond the blue-green waters from which they came.
Sources and further reading:
