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19
54
Arizona State Havasupai Indians
Debate Score:73
Arguments:25
Total Votes:102
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 Arizona State (4)
 
 Havasupai Indians (24)

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Data Ethics 7:30 Group

Read the following article.  In your current events group, assign one person to be for ASU, one person for the Havasupai Tribe, and one person to be the clincher (whichever side you choose)

Do you side with the Havasupai tribe or the researchers at ASU?  List your thoughts below.

http://www.nytimes.com/2010/04/22/us/22dna.html?pagewanted=all

Arizona State

Side Score: 19
VS.

Havasupai Indians

Side Score: 54
5 points

The only issue here is when the university discovered the true origins of the tribe and the inbreeding that was going on there. While yes its embarrassing but the university did not profit from this discovery, the university did not go around telling everyone the true origins of the tribe. Arizona State could not figure out the solution to the diabetes that were plaguing the tribe, so while trying to figure out the answer they were also using their DNA to find other problems and what solutions their DNA may provide to already existing medical issues. Also when the tribe singed the terms and conditions of donating their DNA that was quoted in the article; “study the causes of behavioral/medical disorders.” That states that the use of their DNA can be used not only to find the problem with what causes diabetes in the tribe but also many other issues that deal with "medical disorders". Also the donors were given the chance to ask any questions they have when donating their DNA. Also this is coming from the legal aid representing the tribe said that with the funding and research that was conducted using the tribes DNA could have established a health center for the tribe amongst other resources to help the tribe. In the end it came down to personal pride and money.

Side: Arizona State
3 points

Although the tribe may have felt misled or betrayed because of the studies done with the data, it still produced results that are in the interest of the tribe's general public health. Inbreeding is a reasonable concern within a small community, and the tribe's knowledge of this information could prove very useful for future generations to come. The results obtained from the tests that the University performed on the blood have implications that are larger than the initial concern on type 2 Diabetes.

Side: Arizona State
2 points

The blood was giving as a donation and the consent signed did not just limit the blood testing to just diabetes research. So all in all the university did not step pass there means they just wanted to continue research

Side: Arizona State
1 point

Arizona State did not step outside the boundaries outlined in the consent form. "Roughly 100 tribe members who gave blood from 1990 to 1994 signed a broad consent that said the research was to “study the causes of behavioral/medical disorders.” Although the tribe wanted to find a cure for the rampant diabetes within them, they signed a formed which did not limit Arizona State to just that. Many members were angry that incest was found to be very common in their tribe. This may be embarrassing but they agreed that the university could “study the causes of behavioral/medical disorders.” Incest is certainly something that could cause these issues.

Side: Arizona State
4 points

:D As this is so far an open discussion, I would like to contribute.

I see both sides to this. On the medical side, I can see where having to line up, word for word, what samples would be used for would be daunting not to mention there could be potential to generate discord when a person has a say in what their sample is used for. Say a person donating blood doesn't like the look of someone, be it skin or gender. Would they get to say who has access to their blood in a time of need? This is a little extreme, but to me it focuses on the control that the donor has vs. the medical necessity, be it DNA research or for studies in various diseases.

However. I fully believe that the Havasupai Indians were mislead or at least didn't fully understand, what their blood donations were being used for. In this instance it is a small, isolated tribe that trusted researchers with their DNA to figure out the issues they were having with diabetes. This wasn't a massive DNA collection endeavor, it was a specific group of individuals that were targeted for their rarity. Their trust was broken in this and I don't blame them for being angry. Not only was their DNA not used specifically and solely to help their situation but it was used to call into question their very belief of how they came to that location.

Side: Havasupai Indians
3 points

I strongly believe the Havasupai Indians have the right to be upset. They were not formally notified about what their blood samples would be used for. ASU should've at least been honest with them and even after they used their blood samples for other studies they should've of informed them about their findings

Side: Havasupai Indians
3 points

The biggest issue in how ASU conducted the experiment was in its handling of the language barrier. The college wrote the consent form in English, a second language for many Havasupai. The College, which claims to be a leader in indigenous studies, should be more than capable of producing a document in the Havasupai language, yet it failed to do so.

Side: Havasupai Indians
2 points

The Indians were fooled when Arizona State University people who asked for DNA didn't tell all the purposes of the collection. The blood collection was used for research in mental illness and the Indians were not told that. It is technically unethical to do so because the use of someone's blood should be approved by its "owner" before using for anything in particular.

Side: Havasupai Indians
2 points

I am in support the Havasupai Indians. They gave their blood thinking that it was going to be used for a specific purpose and were betrayed when they found out that it was being used for more than they had intended. All though the laws for the dna testing of blood are murky when the department asked the student to remove the slide that had tipped off Carletta Tilousi they were obviously trying to cover up their wrong doing. There was no informed consent because the scientist never highlighted everything they were going to do to test the blood of the Havasupai Indians.

Side: Havasupai Indians
2 points

I believe that the Havasupai Indians have definitely been wronged. Of course, the additional studies that ASU conducted were probably beneficial to science, however they never informed the Havasupai of all their intentions. This problem could have easily been avoided; ASU should have just included all studies in the consent form. I don't think that ASU deliberately wronged the natives, but nonetheless, they made a mistake.

Side: Havasupai Indians
2 points

The Havasupai tribe did not consent to their blood being used in the university's research. Although there was a very general informed consent form provided, it did not match up with what the tribe was told verbally, which was that the blood was being used for diabetes research in hopes of finding a cure for the diabetes plaguing the tribe's people. The tribe did not receive a cure, any help, or any benefits from giving blood, which is sacred to them, as stated in the article by a member. In addition, the university failed to acknowledge the miscommunication when asked by a tribe member attending a presentation on the research if the tribe had consented to this (knowing that the answer was in fact, no). Ultimately, despite no one being physically injured during the research process, it was still not ethical with respect to ethical codes in research studies.

Side: Havasupai Indians
2 points

I think the tribe is right in saying that they were treated unfairly because they were not asked permission to use their blood samples for research, but they ended up getting very little information about diabetes and how to treat it. Even if the research had potential to discover new information about other diseases and illnesses, finding a way to help treat the tribe members with diabetes should have been their first priority. This was clearly a serious issue, and their well being was dependent on the research.

Side: Havasupai Indians
2 points

While the Havasupai Indians did ask for ASU to conduct research on their blood, there was no form of written consent to make the continued use of the blood samples okay. "The geneticist responsible for the research has said that she had obtained permission for wider-ranging genetic studies." If she obtained written permission for further genetic studies, then this would not be an issue. However, there are no statements or proof of written consent, making the research intrusive and wrong. If I give you permission to use my credit card for lunch, that is all I am allowing you to use it for. You cannot go on a shopping spree because I gave you permission for lunch. Eventually, it evolves to stealing. Which is why the Havasupai Indians deserve the money and support ASU is giving them know.

Side: Havasupai Indians
1 point

I think even with written consent, the scientist -being the one that draws up the contract- would have the onus to detail word for word what the samples could and would be used for. If there was still a misunderstanding and the contract didn't specify, then it would be like not having a contract at all. Much like when you have someone do work on the house, you need to get it detailed exactly what is going to be done.

Side: Havasupai Indians
1 point

The tribe members never agreed to have their blood samples run for for so many tests. It was selfish and unthoughtful of ASU to use their samples in proceedings other than studies related to diabetes without consulting them.

Side: Havasupai Indians
1 point

I am siding with the Havasupai Indians because ASU never told them what they were using the DNA for. ASU took advantage of them and used their DNA for lots of stuff the Indians did not give them permission to study.

Side: Havasupai Indians
1 point

It is unethical to run more extensive tests than what was given permission for. It would be the same as everyone in the US being in a giant dna database ready to be tested whenever there is a crime. The native americans have the right to say what they do and do not want done with their dna. It is private information that researchers are not entitled to know.

Side: Havasupai Indians
1 point

The University stated that they where going to use the blood samples for diabetes research for the Havasupai Indians. They were given consent by the Havasupai for that purpose only, they never agreed or were informed of what else they were going to test. ASU in this case acted "unethical", they didn't have any real freedom to do what they wanted with the blood and yet they still did it. Besides that they in a sense ruined the very culture of the Havasupai, the article stated the experiments led to believe they originated from Asia not from America. Thus there were more consequences with them acting on their own accord.

Side: Havasupai Indians
1 point

I feel that the Havasupai tribe was lead in the wrong direction by Arizona State University. They were approached by the University to research their genetics regarding the diabetes trend that has been seen throughout their tribe over the years. The Native American tribe gave consent to have this issue researched by the University but the researchers went beyond researching only this issue. They found that in their genetic research there were other health issues that the Native Americans had in their genes.

I feel that Arizona State took advantage of this group by going beyond what they had agreed on with the tribe and crossing an ethical line with what they published without permission of the tribe. I feel that the tribe's privacy was violated and that the university broke the consent contract by going beyond only researching the diabetes issue and then publishing results about other issues.

A good way to remain ethical would have been to have seen these other issues and gone directly to the tribe leaders to discuss what they wanted to do and felt comfortable doing moving forward with the data that Arizona State collected.

Side: Havasupai Indians
1 point

I think the Havasupai Indians have the right to be upset. The way the information was collected from the tribe by Arizona State University was unethical. The tribe does not have access to a great education, thus they were taken advantage of when they agreed to this blood testing because they did not know any better. They were told they only were testing for Diabetes, however they tested their blood for more and made money off this research. I think if ASU would have clarified exactly what they were researching, the tribe would not have been so upset and felt so taken advantage of.

Side: Havasupai Indians
1 point

I support the Havasupai Indians for many reasons. Primarily, the Havasupai Indians reached out to Arizona State, hoping to get an idea as to why their diabetes rates were so high. They gave them their blood samples for that reason only. However, the university took it upon themselves to use those blood samples for many other tests in which the Havasupai Indians did not ask for nor give them permission to do. The geneticist states that she received permission for these studies, yet the university still agreed to pay $700,000 to the tribe members. This show guilt and wrongdoing from the University, regardless of what reasonings they had for doing so. The university did not obtain permission to continue further studies with their blood samples and therefore are wrong for doing so.

Side: Havasupai Indians
1 point

The Havasupai Indians have the right to be upset with Arizona State. The university took something very personal (blood) from the tribe, with the tribes knowledge that it would be used to study diabetes in the tribe. By studying other things with that blood, the university defied their rights they were given by the Indians. Also, the consent form that the Indians signed was in English, a second language to most. It was very apparent early on that the tribe wasn't as respected as they should be. If the researchers wanted to study all of these different things about the tribe, things might have gone over a lot smoother if they had discussed it with the tribe.

Side: Havasupai Indians
1 point

I believe that the Havasupai Indians have the right to be mad about ASUs actions. They all did not consent to having their blood tested and ASU went against their wishes by not fully elaborating on what it is they would be doing with the samples. ASU went onto the Indians property and took something of theirs without their informed consent. The tribe was not aware of what the blood was being used for had their blood taken away from them without their permission. It was wrong for ASU to take the tribes blood just to do research.

Side: Havasupai Indians
1 point

I sided with the Havasupai Indians because they were not completely informed about what tests their blood was going to be used for. They did give consent to the University but they gave consent only for their blood to be tested for diabetes. The University should have been more specific and informing with the tribe about what tests exactly were going to take place. The Havasupai Indians were taken advantage of and have the right to be angry.

Side: Havasupai Indians
1 point

I believe that the Havasupai Indians were treated with disrespect. The fact that their blood samples had been used to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories without their permission is disappointing. I feel like the Indians would have been collaborative if they had knowledge of what tests were being done. It is like their blood was being taken advantage. The University would have saved so much time and money if they did the right thing by the Indians and told them what they were getting themselves into.

Side: Havasupai Indians