Within the span of four years Arizona State University has used the DNA of approximately 400 people from the Havasupai Native Nation without their informed consent. This started when members of the Havasupai agreed to donate blood samples for research on type 2 diabetes, as the Native Nation has a high rate of diabetes. When the researchers took the samples, they explained the blood would be used in type 2 diabetes research; which it was, however they also used the samples in other studies in which the participants were not properly informed that their samples would be used in multiple research studies. This case ultimately brought up many issues with informed consent. Medical consent needs to apply to every participant taking place in any form of medical research or treatment, and each individual needs to be completely informed of everything that will or could happen to their samples.
The case of the Havasupai Tribe of the Havasupai Reservation v. Arizona Board of Regents and Therese Ann Markow 2009; Hart and Sobraske 2003, resulted in many questions arising regarding whether or not the participants were completely informed about what their blood samples were going to be used for. In the medical profession when explaining to a patient what will be occuring during a surgery or a simple donation for a study the patient needs to be completely informed so that they can make an educated decision.
When researchers came from ASU to request the Havasupai people to participate in a diabetes research study, due to the fact that the Havasupai people have very high numbers of diabetes amongst the population, the members of the Havasupai Nation were willing to help with the research. The members were verbally informed that the blood would be used for type 2 diabetes research and were not informed that the samples would be used in other research. After agreeing to participate they signed a from stating that they agreed to participate, as is standard for research studies. However, this form stated that the blood samples collected could be used for a number of different tests, such as a Schizophrenia study. “Since mental illness is highly stigmatized in the Havasupai culture, tribe members asserted that they would not have consented to such research had they been properly informed,” (Garrison 203). The members of the tribe later discovered that their blood samples were used for these types of test and were extremely upset; had they known that their blood samples would be used for these types of test, it is unlikely that they would have agreed to participate in the study. The Havasupai Nation then launched a lawsuit against the researchers. The case never went to trial and was settled outside of court with a settlement of $700,000 with all of the remaining blood to be returned to the Havasupai Nation for proper disposal in accordance with their beliefs (Garrison 203). This could have been avoided if the members of the research team had properly informed the participants regarding what their blood samples would be used for. Not completely informing the participants of what the full study consisted of failed the Hippocratic oath.
The action of the researchers was a disregard of the Hippocratic oath. In the United States prior to WWI, “Physicians were taught to withhold distressing information from patients because it was assumed that providing it would only burden them needlessly,” (Lasser 106). Today physicians are trained to completely inform patients of all the information regarding their care. In the United States, doctors take an oath to stay moral and uphold medical ethics of the United States. This oath is a revised version of the original Hippocratic oath written about 2,500 years ago by Hippocrates in Greece (Chaney). The oath is revised to incorporate new technology and new views on how the patients need to be treated. Part of the oath states “I recognize that the practice of medicine is a privilege with which comes considerable responsibility and I will not abuse my position. I will practice medicine with integrity, humility, honesty, and compassion—working with my fellow doctors and other colleagues to meet the needs of my patients,” (Sritharan 1441). This is only a segment of the oath new doctors take in the United States. The Hippocratic oath also states that doctors must assure that patients are fully informed so that patients can make knowledgeable decisions on the situation or whether or not to participate in a study. When taking the oath new doctors also state “I will not permit considerations of gender, race, religion, political affiliation, sexual orientation, nationality, or social standing to influence my duty of care,” (Sritharan 1441). Thus, part of a doctor’s responsibility is making sure they are fair to everyone and give all people the right resources so that patient can be informed on everything and give them the opportunity patients deserve to make the right decisions. These values should hold true for all medical studies and research.
Native Americans along with everyone seeking medical treatment in the United States are covered under the Hippocratic Oath that doctors take either during or after they graduate from medical school. After researchers from ASU used blood samples for mental health research without the consent of the individuals who participated in the research were extremely upset. The people knew that they had been treated wrongfully; as they were not informed on everything that their blood samples would be used for in the study. Being fully informed about any and all research falls under medical consent. After the incident with ASU the “Havasupai Tribe issued a ‘Banishment Order’ barring all ASU researchers and employees from the Havasupai reservation and halting all research,” (Garrison 204). Since the Havasupai Nation was not treated with respect by the failure to completely inform the members of the use of their blood samples the Nation no longer trusted outside researchers. The Havasupai Nation and other Native Nations are reluctant to change the laws they made to protect them from a reoccurrence of this disregard for their medical consent (Garrison 204). The Havasupai Nation does not participate in any more studies, even though researchers are continually requesting the Havasupai Nation to participate in their genetic studies.
This case ones the concern; how many times researchers have not properly informed participants what would be happening with the participant’s sample, so they can benefit and make sure they have enough participants for their study? “The broader impact of the Havasupai case on biomedical research remains largely unknown,” (Garrison, Cho ). Not knowing how this case will completely affect medical research is worrying to some because this case was not settled in court. It leaves the door open for a reoccurrence to another group of people. These researchers took away the participants sovereignty, self-determination, identity and diversity. They took away the peoples’ right to be informed on the decisions they make for themselves. This case helps me better understand sovereignty because in order to self-govern you must be fully informed about what might happen so the correct decisions can be made for an individual. Self-determination is also described throughout this case because the individuals who participated in the test were not fully informed of what would be happening with their blood samples. The Havasupai Nation was not happy that they were mistreated, and they banned the researchers from coming back onto the reservation and they are still refusing to take part in other studies because they no longer trust outside researchers. During the research process the identity of the individuals is solely that they are Havasupai. Even for medical research a person’s full self needs to be considered. No one can only be evaluated by what their heritage is. Identity and diversity go hand in hand because everyone is different from one another and even in medical research that is something that needs to be considered.
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