Havasupai Tribe v. the Arizona Board of Regents facts for kids

The Havasupai are a Native American tribe living in the Grand Canyon. Between 1990 and 1994, members of the tribe gave blood samples to Arizona State University (ASU) for a study on type 2 diabetes. The tribe had high rates of this disease and wanted to understand why. They believed their blood would only be used for diabetes research.

However, in 2003, a tribe member named Carletta Tilousi found out that the blood samples were being used for many other studies without the tribe's permission. This led to a lawsuit in 2004 against ASU. In 2010, the Havasupai tribe won the case. They received $700,000, and their blood samples were returned. This was very important because blood and DNA are sacred to Native American culture. This case showed how important it is for researchers to be honest and get clear permission from people in studies.

The Research Project

The research project at ASU started because the Havasupai tribe reached out to Professor John Martin. They trusted him and were worried about the rising rates of diabetes in their community. The tribe agreed to give blood samples to study a possible genetic link to diabetes. They understood that the blood would only be used for this specific research.

Professor Martin and Dr. Therese Ann Markow worked on the project. Dr. Markow wanted to study other health issues, but Professor Martin thought the tribe would not agree to this.

Before collecting blood, the university had tribe members sign a consent form. Many tribe members had not finished high school, and English was their second language. Because of this, they thought the form was only about the diabetes research.

The Havasupai tribe was looking for a genetic link to a type of diabetes called non-insulin-dependent diabetes mellitus (NIDDM). This type of diabetes is common in Native American groups. After their research, the ASU team did not find a genetic link to NIDDM in the Havasupai tribe. But they continued to use the blood samples for other studies without the tribe knowing.

Cultural Beliefs

Many of these additional studies went against the Havasupai tribe's beliefs. The tribe believes that if any part of a person's body is not buried with them after death, their spirit cannot rest. So, they expected their blood samples to be returned.

The Court Case

The lawsuit, called Havasupai Tribe of Havasupai Reservation v. Arizona Board of Regents, went to court on April 20, 2010. It was found that the DNA samples, meant for diabetes research, were used for other studies by different groups without the tribe's consent.

Ms. Carletta Tilousi was the one who discovered this and brought the case to court. ASU argued that the tribe waited too long to file their claims. They also said the tribe did not show enough proof of emotional or physical harm.

The court found eight cases of wrongdoing by the ASU researchers. These included sharing private information, misrepresenting the tribe, and not getting proper consent.

What Happened Next

The Havasupai tribe members whose DNA was used without permission received $700,000. Their blood samples were also returned, along with a list of everyone who had received their samples. This was very important to the tribe because blood and DNA are sacred in Native American culture.

ASU also agreed to help the Havasupai tribe with their education, health, nutrition, and economic programs. However, after the case, many Havasupai tribe members became afraid to seek medical help. They worried that their DNA might be used for other research without their consent.

Impact on the Havasupai Tribe

Carletta Tilousi is an important member of the Havasupai Tribe. She works as an advisor on environmental justice issues for her tribe. In 2003, she found out that ASU researchers were using the tribe's DNA samples to study topics like schizophrenia, ethnic migration, and family relationships, not just diabetes.

She stated that tribe members, including herself, would never have agreed to this kind of research. The use of their genetic material was without their permission. After learning this, she told the other Havasupai tribe members.

Tribe's Response

After finding out, the Havasupai tribe issued a banishment order in May 2003. They felt a strong distrust for researchers and a sense of injustice because they had not given their consent. Many Native American tribes, including the Havasupai, see DNA not just as an object, but as a sacred part of a person.

The tribe also explained that topics like mental health and family relationships were private and not openly discussed. They would never have agreed to their DNA being used for such research. Because of this, the tribe decided to take legal action, leading to the lawsuit.

Debate Among Scientists

This case also made many scientists discuss how to get proper consent from people in studies. Some scientists argued that it should not be necessary to get new consent every time DNA is used for a different study. Dr. David Karp, a professor, asked, "everyone wants to be open and transparent… the question is how far do we have to go?"

Many scientists agreed with Dr. Karp. They felt that once written consent is given for DNA use, researchers should not have to contact the person again for every new study. Dr. Markow, one of the lead researchers, said, "I was doing good research." He believed his work was important and did not need new consent for every use of the DNA.

Impact on Medical Research

The Havasupai Tribe case had a big impact on research, especially in genetic studies. Even though the tribe received money and their blood samples back, the court case did not create a new official law about how to handle medical samples or informed consent.

However, the case did lead to many unofficial changes. One of the biggest changes was a deeper distrust of medical researchers among Native American people.

Distrust and Delays

This distrust has made many Native American groups unwilling to join medical research studies. Some tribes have even stopped their members from taking part in research to protect their cultural beliefs. Many American Indian tribes now have their own committees to oversee medical research in their communities.

In the long run, this distrust could slow down medical research for Native American populations. Their health research is already behind that of other groups. So, it is important for researchers and Native American communities to rebuild trust.

Importance of Consent

The Havasupai case also showed how important informed consent is in all research, especially when it involves health and the human body. The United States Food and Drug Administration (FDA) says that informed consent means telling a person the full purpose of the research in words they can understand. It also means clearly explaining their role and rights.

Another important idea is debriefing, which means telling participants about a study after they have taken part. This is often used in studies where people are intentionally misled for research purposes. But even then, informed consent is still needed. In the Havasupai case, the researchers did not get proper informed consent or debrief the participants, which are serious ethical mistakes in medical research.

Protecting Vulnerable Groups

Finally, this case highlighted the need to educate and protect groups that might be easily taken advantage of. Author Nanibaa' Garrison believes that both researchers and participants need more education on informed consent. This way, people will know their rights and be less likely to be exploited.

Other experts also argue for more fairness in genetic research involving Native American groups. They say it's important to recognize the cultural harm that can happen in research. They also suggest that researchers should be more sensitive to different cultures when designing studies for minority groups. These scholars believe that medical researchers must put in place ways to prevent the exploitation of Native populations during studies.

Similar Cases

While many leaders are calling for more fairness in genetic research with Native American groups, there have been other studies that have exploited these populations.

• Moore v. Regents of the University of California (1990): In this case, the California Supreme Court ruled that individuals cannot share in the profits from research done on their own body parts. A patient claimed his doctor used his blood samples for profitable research without his clear permission.
• Norman-Bloodsaw v. Lawrence Berkeley Laboratory (1998): In this case, the Lawrence Berkeley National Laboratory tested the blood and urine of employees for private medical conditions, like sickle cell anemia and pregnancy, without their consent.

These cases also showed the importance of informed consent and the use of lab samples. However, no official law was created to stop medical researchers from exploiting vulnerable groups.