Beginning in 1990, Arizona State University
began a study using DNA from the Havasupai Tribe in Arizona. Read the
articles at the links below. Discuss the importance of informed consent
in human subjects research.
Indian tribe wins fight to limit research of its DNA
From the New York Times (04/22/2010)
Havasupai case highlights risks of DNA research
From the New York Times (04/23/2010)
Informed consent and the ethics of DNA research
From the New York Times (04/23/2010)
Due Tuesday, July 3rd
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11 comments:
To quote an old Sci-Fi show, “the truth is out there.” The whole point of science is to answer the questions of what, who, where, when, why, and how. When you donate your body to science, there isn’t a disclaimer that says “to medical students only.” Your body, or parts of it can be used for a wide variety of things, including limb, skin, or organ transplant. Parts of you may also be cut up to study a disease, or use your DNA for a wide variety of tests. I don’t personally see how DNA tests should be different, as long as they aren’t disclosing whom the DNA belongs to (ie: Mrs. Jones). If the tribe were asked to donate samples for the study of diabetes as well as other various tests, I think some would have donated and some would not. The article states the origin of their tribe is a touchy subject. Science and religion do not mesh well in the face of facts. To me it is unimportant what my DNA is being used to prove or disprove and therefore informed consent isn’t a make or break deal. I’m not sure how many people share my opinion on the subject. I think the ethical way to go about getting informed consent is to be up front with everything you plan to do with the genetic material. For the Havasupai Tribe perhaps they should have gotten a consent form for diabetes only. The consent form may have been for a blanket list, though someone should have told the tribe that. However, I do also believe it is up to the tribe leader to ask to look over the agreement and just come out and ask what they are asking to have their people sign. No one should sign a contract without reading it, and it appears that is what the Havasupai people did.
Informed consent is important so that people are not being taken advantage of. The people who are being tested need to have the knowledge of exactly what they are being tested for. This is like invluntary servitude, when you have someone sign something or work for you and you never tell them ecxactly what theyre doing for you so they are under contract for whatever job you make up on a whim and they have to do it. This is a similar scenario. The case with the Havasupai Tribe was where their blood was taken and they had been told it was to study their rate of diabetes, but scientists basically had a free for all with their specimens. They did not educate the people on what the true reason for taking their blood was. To me, this is wrong. One of the articles said that the people are not in charge of their own cells. This sounds crazy to me. How am I not in charge of my own cells in my body? What gives someone the right to come take blood from me and use it for whatever they want if i think or am lead to think it is for a specific medical test. We have the right to our own bodies and cells and once the government comes in and starts to take over that, what else will we have left? Soon we will have no rights at all.
When it comes to research being done on human, it is a very touchy subject. I guess at the time researchers wanted to offer assistance to the Havasupai Tribe in finding the cure or clues to the wide spread of diabetes occurring in their community. So, a verbal and written consent form was taken from donors and of course they made it simple for them to understand. From the start of the research, the donors were not completed informed about everything that would occur including the benefits and risks involved in the study. The "informed consent" would have listed everything that would be involving in the study. The most important disclosure of risks and benefits which is this case revealed the origin of the Havasupai, researcher found that they are from Asia. I can understand how hurtful and shameful the Havasupai must have felt because for generations they knew themselves as the "guardians of the Grand Canyon." The Tribe felt betrayed and most of the researchers findings actually hurt the tribe culture than benefited them. The Havasupai also find out that the researchers have not found any clues to the diabetes disease taken over their people. I think if researchers were up front and listed and collected an informed consent form from everyone and explained in detail their whole study, they would be out of trouble and actually help the Tribe understand where, why, how and who the disease targeted. In order to find the link to diabetes that the Havasupai only wanted, they must understand that " the fundamental nature of research, where progress often occurs from studies that do not appear to bear directly on a particular disease." This statement should have been explained and understood by donors in research studies. This case were supposed to benefit the tribe and science instead it turned sour for everyone on both ends, it could have been prevented if researchers were more clear about the study and the donors were informed about the outcomes.
From the articles we read, informed consent is obviously crucial. The Havasupai tribe was only given partial information, which to me seems just as bad as not having consent at all. The Native American tribe has different spiritual and medical beliefs than we do, and abusing consent on DNA research cost ASU more than 700,000 dollars. This could have been totally avoided if the scientists would have gone over the full consent with the tribe. There was no cultural competency involved.
Informed consent is absolutely important in human research studies. When using a human to rest on, that human needs to know what the testing is about. If they don’t, there is always the possibility they will sue you for breaking their consent. Being culturally competent is necessary when you discuss ethics, and when using human test subjects, it is vital to have complete informed consent.
Informed consent is important because it protects health care providers from any legal problems that may arise during their health care career. Informed consent forms a "promise" built on trust between the doctor and the patient. In this promise, the patient needs to understand that the doctor is doing all that they can to help them and as well as keeping them well-informed of possible risks along the way. The doctor as well understands that the patient only knows what you tell them and that it is their duty to properly educate them of all they need to know. If that promise is successfully carried out, no discrepancies should arise and everything should go along smoothly.
Informed consent in my opinion, as it pertains to the Havasupai Case, is that it is not needed. This means that I support the researchers’ actions when they "stole" the blood. Because when it all boils down to it, every person in that Indian group is just another statistic. Their sole purpose of that study was to use the information that they gathered to bridge the gap of unknown information. I understand that the Havasupai view their blood as sacred, but their blood is detrimental to further understanding our existence. I'm supporting the "kill one save a thousand" ideology; instead, I'm saying when it’s something as simple and non-life threatening as drawing blood, people need to get over themselves and do their part to help out.
The only instance in which I would support informed consent is when the procedure for patient is potentially life threatening or the costs are too expensive. At that time the doctor should fully educate the patient and provide choices as to what the patient could do. But in today's times, people do what they want to get what they want. I feel that doctors no longer stand on the principles that medicine was first built on. Today, medical care professionals leave out certain details that a patient might need, all in an attempt to cheapen/expedite the patients' processes.
I feel that the havasupai didn't get treated right. Yes they did give them a consent form but probably a very,brief for, which to me is not right, I fell they should know exactly what they are agreeing to. When you tell people one thing and have them sign for another is just totally wrong and they had beliefs that they follow.
I think informed consent is super important, it is letting people know what they are signing for before they say yes. If you have someone sign a for,my hat is not stating everything I feel that should be illegal, nobody should be mislead and have their signature on legal docs for things like testing and ect because those are moorland things that people have a right to do if they want. Not because someone twisted them into it.
Informed consent is important for not only the patient but also the scientist. If there were more communication between the doctors and the patient there would be less legal issues to deal with and trust would not be broken. I believe it is important to know exactly what donated DNA is being used for. For example what if something like schizophrenia was a disease that I do not believe exist, I wouldn't want to donate my DNA toward studies that I do not believe in. In the case of the Havasupai Tribe scientist went way beyond just researching diseases. I feel their tribe was disrespected. They researched where the tribe originated from and gave that information to the world, when all there life they believed they were from the Canyons, generations were disrespected. If they had known that they were going to be dissected they would have never consented to donating there DNA. Like stated they were under the impression that their blood would be used to help their tribe with more information on diabetes and they were given little to no information. So I can understand them being upset and disrespected. I'm not against research, scientist, or doctors, but I do believe that patients can easily be taken advantage of especially when things are put in scientific jargon. Informed consents should be more detailed in what they actually mean, “Study the causes of behavioral/medical disorders” does not sound like just diabetes. So to someone that does not fully understand medicine it can be confusing. Especially when they see that their loved ones are dying and having there limbs amputated it causes a sense of fear, and when offered help by a medical professional for answers you put your trust in them. So informed consent is very important for any procedure or research whatever the case may be and to make sure that the form is written in a way that the doctor and patient understand it. It protects the scientist and/or doctors and keeps the patients trust and respect.
Informed consent is very important. I think its something that needs to be exactly as it says Informed.... Consent not just consent. The fact that they were told that it was for testing of diabetes the forms that they signed stated "behavior/medical disorders" so its easy to see how they could of become confused or not fully understand the intent of those words. The diabetes is what they went to the researcher to find out not look up everything other than what was asked for so if it was more like, these are the results for diabetes .. i would also like to test for other medical conditions and gene origin, they would of been in the clear because they were properly informed ... alot of times people sign papers and dont know what they mean and i think they should have to give the whole picture in black and white not with gray areas where you really dont know what they are saying. We as a people tend to take a smile as a sign of trust and in my opinion the trust was broken. Science is ok in my opinion for the people who want it but i feel people who dont because of there religious beliefs or whatever the case it should be their choice. for a child to be told that his father isnt his biological father when he just came in to get swabbed for strep throat with a small disclaimer but not really being informed would be a bad situation. Also in the article one view point made it seem to be a heavy burden to have a persons specific wishes with their dna to be stored, i feel that what ever purpose people choose to give it should be respected because they didnt have to give at all. If someone is an organ donor and wants their body parts to go to the less fortunate rather then be used for class dissection it is there right so when they ask you if you would like to be an organ donor at the mvd i think they should properly inform you of what it will be used for before you give consent.
From reading these articles it is clear that obtaining informed consent is essential in any scientific or medical study. The informed consent serves purposes of making sure that the person or persons being studied are aware of the exact nature of the study. Also the informed consent is important because it legally protects the researchers or healthcare providers. In this case the Havasupai tribe was not given proper informed consent. I believe the researchers had only the best of intentions but in this day an age everything has to be clearly discussed and verified with a proper legal informed consent. I believe that the most important aspect in reference to informed consent is that it is at detail as possible. I know form the stand point of a nursing student it is not good enough just to indicate that there are risk to a particular procedure but it is imperative to list those exact risk in very specific and not general terms. Therefore the informed consent truly has to be informed.
Informed consent is one of the primary ethical requirements underpinning research with human subjects; it reflects the basic principle of respect for persons. It is too often forgotten that informed consent is an ongoing process, not a piece of paper or a discrete moment in time. Informed consent assures that prospective human subjects will understand the nature of the research and can knowledgeably and voluntarily decide whether or not to participate. This assurance protects all parties: both the subject, whose autonomy is respected, and the investigator, who otherwise faces legal hazards.
By definition, informed consent is a process that includes the presentation of information to the prospective subject, adequate opportunity for the subject to ask questions and have them answered, and documentation of the voluntary decision to participate. It is a fundamental mechanism to ensure respect for persons through provision of thoughtful consent for a voluntary act. The procedures used in obtaining informed consent should be designed to educate the subject population in terms that they can understand. Therefore, informed consent language and its documentation (especially explanation of the study's purpose, duration, experimental procedures, alternatives, risks, and benefits) must be written in "lay language", (i.e. understandable to the people being asked to participate). The written presentation of information is used to document the basis for consent and for the subjects' future reference. The consent document should be revised when deficiencies are noted or when additional information will improve the consent process.
In the case of the Havasupai tribe, the consent form should not have been so vague, it should have listed any and all tests that were to be completed on the samples that were provided. An example may be like a consent form for surgery that someone may sign stating many certain things that the doctor has permission to do if certain situations come up after surgery has begun. This way, the tribe members would be more informed of tests that were going to be run on the samples. In a way, it is like the members were deceived when they signed the consent forms.
The people of the Havasupai tribe have the right to be upset about their treatment. It is a fine line between consent and consequence. Informed consent means that the parties involved have a full disclosure of the intent of the project. The people gave their consent but it was based on their misunderstanding of what was going to be accomplished. This was because they were mislead with promises to find a common thread of what the Havasupai nation was plagued by way of diet and genetics. The people of the Havasupai tribe were only hoping for a solution but were convinced otherwise. It is a sad day when scientists cannot be an open book for what their intentions are made to be. The Havasupai people were too trusting and did not ask enough question, being that they put too much trust in the word of the scientists. Since there was a breakdown of the consent given by the Havasupai, the consequence has become distrust and an entire group of people that are now lacking hope to have a backing of support.
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