Michael DiPrima, Paige Ritzman, Katelyn Michel, Christopher
Troise, Luke Smith, Ville Salakka, Jordan Luhrs, Alaura Filbin, Dallas
Morrow, Janis Watson, Bryan Akerley,
Read Their Op-Eds, Please Use Your Search Function)
Topic the Students Wrote On:
on the information presented in the five case studies, you
are to voice your view on how Institutional Review Boards (in the
U.S.) and/or Review Ethics Boards (in Canada) should enforce a
set of common rules regarding research. How much freedom should
researchers be allowed in conducting their research? What regulations
should be enforced to prevent the abuse of research subjects and
ensure, more generally,
Do No Harm: A Question of Ethics and Human Health
Do no harm. A common principle that is followed by anthropologists and doctors alike. A simple phrase with a simple meaning. No matter what your goal is, in any work relating to anthropology or medicine, one must strive to do no harm at all to any human being. For anthropology however, this principle was put into effect only recently, roughly 39 years ago. Considering that anthropology started in the early 18th century, it took a long time to reach this turning point in history. Before this principle arose and the IRB (Institutional Review Board) came into existence, these experiments were very unrestricted, and allowed a lot of freedom for researchers globally. What could possibly go wrong? This allowed researchers to preform very beneficial research that had the potential to benefit society in numerous ways. A lot of these discoveries took place without restrictions. But what happened when a moral issue arose? Who was the governing body to determine what was okay and what was not okay? Simply put--there was no official group. This led to many problems. One experiment, which led to the creation of the IRB was the Guatemala Syphilis experiment. The question at hand with this experiment was weather the moral standing of the experiment outweighed the medical benefits that it left behind and weather the creation of the IRB fixed the issue with cruel experiments.
To understand the moral issue here, one must learn what exactly was going on. First and foremost, syphilis is a very contagious disease that is spread during sexual activity. Syphilis is caused by bacteria that at the time were very hard to treat. Society did not have the medical knowledge on how to treat such bacteria related diseases. Syphilis for example, was almost becoming a pandemic in the late 30's and early 40's. This led to the United States government to begin research on the disease. The United States government with collaboration with the Guatemalan government allowed the research and study of syphilis in the Guatemalan area. The Study began in 1946 and ended in 1948. It was documented that Guatemalan doctors deliberately infected soldiers, prostitutes, prisoners, and mental patients with the disease. It should also be note that these individuals were infected without written consent from the patient (Public Anthropology). The goal of this experiment was to test the effects of the drug penicillin. Penicillin at the time was a brand new anti-biotic that had great potential. The end result is that penicillin currently saves the lives of millions of people, and is still in use for a wide range of medical treatments today. The question that stands today is: Was this experiment morally okay to conduct? Was the cost of infecting unknown patients with this disease justified by the lives that are currently being saved by this research? I believe that without the experiment, the discovery of penicillin could have been overlooked, which could have led to issues in the medical field. At the same time however, I believe that the experiment went way too far, overstepping its moral boundaries by not acquiring conformed consent from patients and injecting them with (at the time) a potentially deadly disease.
The discovery of penicillin was a monumental step in the right direction for the medical field and had this experiment not been conducted, penicillin may have been unnoticed by the world. During the 20th century, medicine was still a fairly new field, and new concepts and ideas were being discovered left and right, such as penicillin. In order mass produce the drug for the public, there needed to be substantial evidence that the drug was not only effective, but was safe as well. Today, there are very strict rules on drug testing, and drugs must go through several phases in order to be successfully approved and distributed to the public. Up until the late 20th century, no such rules existed, and any credible research done would be enough to approve a new drug. This was the cause for the experiment. The research done in Guatemala proved penicillin could combat the syphilis bacterium, and do so without dangering the patient in harmfull ways. With the use of penicillin, only 83 deaths occurred (Public Anthropology). With the recorded number of roughly 1500 people with the disease, that is a very small percentage of people (less than 6 percent) dying -- 83 deaths to save millions of lives in the future. While this is clearly a moral issue as well, there is no doubt that these people who died saved the lives of many people in not only their time, but the present as well.
The number one issue with this experiment was the fact that no written form of consent was given, leaving many patients unwilling to defend themselves from the virus if they did not want to be part of the experiment. The best way to imagine the situation is to be in their shoes. Picture being forced to see a doctor and for the doctor to tell you that he will be injecting a disease into you for study. This would most likely raise an issue, and you would not be okay with this. Unfortunately for these people, they did not have the right to resist, and being prisoners, or mental patients, it was easy to study these people while they were sick. The thought of experimenting on these people who did not agree to be tested is scary, and the fact that the leading world super power (The United States) at the time was allowing this to happen is a very frightening idea. Also to hide the finding of this experiment until 2010, and to just send a petty apology to the people of Guatemala is almost disgusting. I believe what happened here was morally reprehensible.
This event was one of the causes for the creation of the IRB (International Review Board). The IRB is a governing body that is specifically designed to review the actions of all biomedical research that involves human rights. They are the head authority "to approve, require modifications in (to secure approval), or disapprove research" (FDA.Gov). They serve as a group to provide unbiased opinions on all research. Anyone who wishes to do research must obtain explicit approval from the IRB to continue. They exist solely to protect the rights of others, as well as to make sure all research is beneficial to the betterment of human kind. If there was any fix to what happened in Guatemala, the IRB is that fix. These strict rules protect people, researchers and civilians alike. They review all research proposals to make sure that all of their intentions are good and morally sound. They make sure that researchers follow the correct protocol when it comes to research, and make sure there are no errors in research topics. They make sure that there will be no endangerment for the researcher or the group that the researcher wants to study. This improves the safety of all people. They also force informed consent, expanding the protection of people who are to be studied. These rules are prime example of protecting human rights, and are a necessity today. Without these governing bodies in place, then research has the potential of being too radical. These potentially radical projects could end up creating dangerous situations for researchers and the cultures being studied.
The IRB protects the rights of the people. Their decisions are what keep other people safe from cruel research. They make critical corrections to better effect research. What happened in Guatemala was a disappointing event in the history of the United States, but the discovery of penicillin was greatly beneficial for the world. The creation of the IRB was the best solution to prevent an experiment like that to happen again. The rules they put into place not only effectively prevent dangerous research projects from happening again, but also improve the quality of research through strict review. These reviews improve the quality of research, while protecting the right of all. With the IRB the world is a better place.
"Public Anthropology | Yanomami: The Fierce Controversy and What We Can Learn From It." Public Anthropology, n.d. Web. 08 Nov. 2013.
"Regulatory Information." Institutional Review Boards Frequently Asked Questions. United States Government, n.d. Web. 08 Nov. 2013. .
How can somebody measure a person's truthfulness, credibility, and ethics? The Institutional Review Boards (IRB) uses pages of paperwork to interrogate an anthropologist before departing for their fieldwork. Even though the IRB requires paperwork, fieldworkers still proceed in studies that arise in questionable ethics. Should the IRB strengthen their rules and become stricter? I believe that the IRB should change their methods of measuring the ethics and trust of future fieldworkers.
It is understandable that some want to strengthen the rules and censorship to diminish the possible questionable studies but if the IRB gave more paperwork and questionnaires, few anthropologists would interact in fieldwork because the paperwork would require more time and energy than anthropologist have. Laurie Essig, an anthropologist fieldworker, explained his unpleasant experience with the IRB; they said, "he did not treat [transgendered people] as a vulnerable population" and he should "plan for dealing with those people as mental illnesses or forget [his] project" (Case Study 3). This may discourage an anthropologist from wanting to learn about other cultures. I understand where the board is coming from, but the board must trust the researchers to determine the well-being of a patient during the interview. For example, if the patient becomes emotional the researcher can make the judgment on which alterations should be made to the preceding questions.
The IRB must find a way to trust their fieldworkers. Currently, the board is using "typos and grammatical mistakes in an application [as an indicator] of trustworthiness" which can be seen as unfair (Case Study 4). Not everybody is perfect and can detect every error they make. Maybe, IRB could do background checks on researchers and interview the person for their intentions instead of just looking at a piece of paper. Paperwork and questionnaires only tell so much about a person. If the IRB renovated their process, they could redirect the question and incorporate interviews to learn more about the personality, ethics, and trustworthiness of a person.
Another change the IRB could make is to do a little of their own research before a fieldworker leaves for research. If the boards were more informed about the area of research for the anthropologist, they could better their decisions. Without the knowledge of the area, how can the advisors make appropriate and educated judgments? The IRB could help prevent misunderstandings such as the anthropologist Heather McKillop's. When doing research, McKillop accidentally contacted the wrong nation for permission (Case Study 2). If the IRB had some knowledge of the area and study, the board could have prevented this mishap. Yes, McKillop should have furthered her research but the IRB could have done research to find the correctness in the study.
The IRB can also make the change to check-in on fieldworkers during their research to make sure they are still obeying the ethics of anthropology and following with the original plan of research. With check-ins throughout the research, the anthropologist may be persuaded to follow the ethics of anthropology. For instance, if the IRB had frequent phone calls to check-in and a couple of times where board members traveled to the site of research, that may prevent unethical research such as the syphilis experiment in Guatemala where anthropologist and doctors gave patients syphilis without consent. Also, the doctors failed to treat majority of the patients and let several of them die (Case Study 1). The doctors would not have been able to provide sufficient information on the study they claimed to be doing and they could not have covered up the evidence or prevented the locals from informing the board members about what was really taking place. Check-ins may have also prevented the nutritional experiments in Canada (Case Study 5). Locals and parents of the children would have been eager to inform the board members of the mistreatment happening to the children in the city.
Instead of becoming stricter on rules and regulations, the IRB can take different means to ensure the fieldworkers are following the ethics of anthropology. After taking such actions to ensure the legitimacy and trustworthiness of an anthropologist, fieldworkers will stop participating in such horrid, unethical studies. These changes could also give a better perception on anthropology because those cruel studies are shown in media and possibly give anthropologist a bad reputation.
IRBs: Are They Too Strict or Not Strict Enough?
After reviewing the case studies I developed a strong opinion on regulations that experiments and studies need to have. Studying human individuals is fine as long as they know they are being studied and the potential risks the study could contain. Regulations may be strict in this day and age, but some of the regulations are clearly necessary. If it weren't for these strict rules case studies like the Syphilis study in Guatemala would still be going on. The IRB (institutional review board) is an important system in studies and a very necessary process. Not only are IRB's protecting the researcher; they are protecting the subjects being researched. At the same time IRBs may be too specific in some aspects of research. In my opinion IRB should not have complete control over the whole study.
After reading about the Syphilis study in Guatemala I came to the conclusion
that receiving consent from all participants is the most important part
of the study. Not only do participants need to know what is going on in
the study they need to know exactly how they will be used in the study.
In the experiment in Guatemala people were infected with syphilis without
any knowledge of it and they tried to cure these people with penicillin,
although this did not work one hundred percent of the time and killed eighty-three
people. This experiment was very unethical and dangerous. In the present
time IRBs would not let this study be passed. Thankfully, the regulations
on studies have been modified to protect the participants of studies and
I believe an IRB is definitely necessary, but only to a certain extent.
An IRB should regulate how researchers treat participants and should regulate
what researchers study, but they should not have as much control on what
researchers ask participants. I believe that researchers should make it
clear to participants that they can always refrain from answering a question
or not participating, but they should be able to ask whatever questions
they want. The researchers need to ask certain questions to be able to
study what they are trying to study. For example, in case study three: "The
IRB and the Future of Fieldwork" it explains how a researcher was
trying to study sexuality among young people, and the IRB did not let her
ask people under the age of eighteen about their sexuality. If the person
is willing to talk about it, with their parents consent as well then researchers
should be able to ask.
You sit on the cold earth, plagued by guilt. Staring down at the hole dug into the ground before you, only dirt is in sight, as the original contents have been emptied. Decades earlier you had promised your grandmother that you would bury her here, atop the hill overlooking the valley- it was her final request. Her bones had rested here peacefully, up until recently when the anthropologists came and dug them all up. Now they refused to return them, leaving your grandmother's soul unable to find peace until buried again, but the anthropologists show no sign of yielding your ancestors' remains any time soon.
Incidents like this can occur out of the IRB/REB not having enough regulations or not making existing ones strict enough. The rights of people from the past should not be infringed upon simply by the curiosity of those in the present, nor should people nowadays be taken advantage of in order to collect data or obtain results. Using the case studies provided, I will show why a lack of regulations is immoral, address possible counter-arguments, and the solutions regulations create.
To begin with, there are the consequences of lacking regulations. In "Case One", it is revealed that some 1500 Guatemalans were infected with syphilis without consent in order to test the effects of penicillin, resulting in at least 83 deaths. In "Case Two", the ancestral bones of one Native community were allowed to be taken with the consent of a completely different Native American community. In "Case Five", people who were starving were, instead of being given proper amounts of food, were kept in their predicaments all so the effects of less calorie intake on the human body could be observed- to both children and adults. When given no rules, people tend to take advantage of the situation and the test subjects involved all in the name of science. Even if it means getting results, people are more than just statistics and numbers.
Following this are counter-positions towards my position. The case I can discuss is depth on this matter is "Case One: The Guatemala Syphilis Experiment". Arguments like, "The ends justify the means", or "Sacrifice the few for the many" can easily be thrown around in cases like these, but was it truly necessary to infect people with syphilis? Why not find people who had already contracted it, and tell them a possible cure was being tested and ask for their consent to be a subject? Had this been done, pre-existing people with the disease could have been cured or would have died in the process, as they would have died without the cure anyway, instead of altering the lives of 1500 people and those connected to them. Another argument can be that the test subjects were people who did not have the rights to give consent or were unable to. "Doctors infected soldiers, prostitutes, prisoners and mental patients with syphilis and other sexually transmitted diseases," a list of people that many consider to have less rights than normal people, but let's examine each one. With soldiers, the main argument could be that once they sign on with the government, they're technically signing their rights away. When people join the military, the majority doesn't do so with the mindset of wanting to take part of scientific experiments- they're normally doing it to protect their homeland/country and its inhabitants. By taking them out of the military, one could have possibly sentenced others in the future to death- as that particular soldier could have saved such individuals had they not been taken out of the military for these experiments. Regarding prostitutes, these individuals were very likely to contract such diseases in the first place- why infect them? The researchers could have simply gotten the consent of prostitutes that already had the disease and told them about the study to see if they were interested. Prisoners are people that society deems beneath them for the crimes they have committed, but not every last prisoner is guilty- there are some who are falsely accused and sentenced, making them the victims of their legal system. Just because a person is a prisoner, does not make them more or less valuable than anyone else. The final group used was mental patients. The obvious argument here could be that as people with mental disabilities, they don't know what's going on anyway, so what does it matter? People with mental disabilities should be taken care of by those they are entrusted to and protected, not subject to harmful experiments simply because of their inability to give consent. What if a relative of yours was admitted into a mental hospital, and they were being tested on by those who were supposed to care for them? A number of these points regarding each group are simply conjecture, but the situations given can certainly be the reality for a small few involved.
Finally, there are the regulations now in place and how they help protect people. In order for one to do research, the IRB has a list of seven main conditions that must be met. The first is, "Risks to subjects are minimized: . . ." With this in place, the cruel treatment to the subjects in "Case One" would have been prevented altogether, as the IRB would never allow such atrocities. The allowing of starvation and insufficient diets in "Case Five" would not have been allowed either, and the funds spent to provide vitamins to a choice few and watch over the subjects could have been spent to actually provide food and help for those who needed it. The fourth regulation is, "Informed consent will be sought from each prospective subject." With this in place, even if the syphilis testing had been put into place, at least those volunteering would be aware of what it was they'd be undergoing and the risks involved, and actually be giving their consent- that way those conducting the experiments would not be seen as taking advantage of or manipulating people. The mental patients injected with syphilis also would have been spared, as they could not actually give their consent as one must be of their right mind. Some regulations ought to be more strict in fact- when regarding how to get the bones of Native Americans' ancestors, one should have to find the tribe the bones actually belong to instead of just the closest tribe.
All in all, the regulations put forth by the IRB/REB are there for a reason- to protect people's rights and to keep them safe. Many complain that they are too strict, but I feel they are just right- if they can't be even stricter in some cases. If one is to conduct research on or relating to a group of people, the interests of all parties involved must be considered, and no one taken advantage of. This is illustrated by what happens when there are no regulations, addressing different opinions, and examining the rules now in place.
Should anthropologists be constrained by stricter regulations from the Institutional Review Board? Certain researchers don't believe there should be tighter rules because they aren't able to research freely and will not be able to obtain the information they wish to gather. On the other hand, some anthropologists are in favor of protecting research subjects because taking care of the people that are allowing research to be conducted on them deserve to be protected. There are many advantages and disadvantages of each, which makes it difficult to decide if the IRB should strengthen its regulations on anthropologists' studies. I believe that the IRB should enforce stronger regulations on anthropologists conducting research because test subjects have the right to privacy and safety.
With tighter regulations on conducting research, anthropologists won't be allowed to take advantage of their research subjects. In the late 1940's, John Charles Cutler conducted an experiment in Guatemala by infecting prisoners, prostitutes, and people with mental illnesses with syphilis with the ambition of finding a cure. The experiment resulted in a total of 83 deaths with many more affected. This is not right because it's inhumane and it's taking advantage of another culture to better ours, thus making it unethical. In my opinion, I don't agree with an anthropologist going into a different culture to perform experiments for their benefits only. This experiment could have been prevented or modified if the IRB had tighter rules and performed more background checks to make sure the anthropologist had good intentions not only for himself, but for his research subjects as well.
The first responsibility for all anthropologists conducting research is to the people he or she is working with. Not only do they need to protect their identity, but they also need to make sure no harm comes their way. The syphilis experiment performed in Guatemala could have been prevented with increased background checks by the IRB along first responsibilities of being an anthropologist.
Along with being ethical and making sure your test subjects are not affected negatively while conducting research, reciprocity is a way anthropologists can show respect and give thanks to whom he or she is working with. An example that involved researchers taking advantage of their test subjects was the Studying of Old Bones Case conducted by students from Louisiana State University. The Huron-Wendat Nation stated, "Researchers improperly gathered the bones from an Ontario ossuary to use for unauthorized research. . . ." It is important for the bones to be restored and buried because the Huron-Wendat believe that, "a person's soul rests with the remains, while a second soul soars skyward." It was wrong for the university to take the bones that belonged to the Huron-Wendat because it wasn't their property to take and the bones were important to the nation. If the IRB made it a requirement to protect research subjects and their property, the Huron-Wendat Nation would once again maintain possession of what belonged to them. Researchers should always give back to the people they are working with and make sure no harm comes their way. The IRB should tighten their rules and make it a priority that anthropologists remain ethnical while performing their studies.
It's easy to explain why something is wrong and why it should be changed, but the difficult part is executing the solution. In terms of researching, it's difficult to regulate anthropologists conducting research in other cultures. As I mentioned earlier, I believe that the IRB needs to perform background checks on the researchers and their topics to they have nothing but good intentions for their test subjects. I also feel that the IRB should perform follow ups and require anthropologists to stay in touch after they are cleared to do their research. The main purpose of this tactic is to make sure the researchers are performing the studies they presented to the IRB and those studies only. All of these precautions are solely based on protecting research subjects and making sure no harm is inflicted on them.
Anthropologists conduct research in different cultures to benefit a larger society. Although many anthropologists are mostly concerned about their benefits, it is important to make sure the first responsibility in your studies is to the people you're working with. I believe that the IRB has the power to enforce stronger regulations that prevent abuse on subjects and secure their safety. With that being said, I think that the IRB should enforce regulations on anthropologists conducting research because test subjects don't deserve to be mistreated for someone else's benefit.
Should We Build or Break the Wall
When it comes to finding answers to questions that could benefit the people of the world, ethics are always an issue. Who is to say what is right or wrong? Anthropological research covers many areas that could be of vital importance to the well-being of the human population. What is the price of such information is what has proven to be problematic.
Anthropology, as everything else, has been developed over time. As human rights and equality have evolved, so have the mission and methods of anthropologists' research. Like three of the five case studies provided for this Public Anthropology's Community Action Website Project illustrate, the methods of past researchers were more than questionable. What they saw as effective ways of gathering knowledge and testing theories and medicines, we today see as horrible violations of human rights. Conducting such research is a constant struggle between what is ethical and what brings strong results, but depriving people from their inherited rights as humans should not be the price of finding answers. We are no longer living in colonial times and no one has the right to take away the value of a person's life.
It is understandable why regulating research is a problem for getting results. As Laurie Essig discussed the issue in the Chronicle of Higher Education, "But as any field researcher... will tell you, IRBs have effectively shut down our ability to actually find out people's lived experiences. IRBs have treated speaking with someone as equivalent to experimenting on them..." As much as none of us want to admit it, the cold truth is that many of the past researches that used methods violating human rights or otherwise mistreated their subjects brought results made of hard facts. Can any regulated research truly reach as definite results, it cannot be determined. Yet, there has to be a line to what we are willing to do and let be done in the name of results.
Perhaps the thing we have in our minds the most when making important decisions as a people is the future. And not necessarily even our own future, but the future of our children and grandchildren. What is the heritage we want to leave to our descendants is what we should ask each other. Do we leave them with a problem that we could not solve because of ethical disagreements or do we solve the problem for them with unethical actions? Actions have consequences, but so does not acting. We should be willing to make a sacrifice for the common good, but who is to pay the price and who to benefit from it is what is debated about. During the time between the years 1946 and 1948, researchers from the United States led a human experiment in Guatemala, testing penicillin against syphilis. Their intention was good, unlike their methods. They purposely infected soldiers and prisoners with the disease in order to gain more test subjects. Only a handful of their estimated 1500 subjects had their penicillin therapy completed. In this case, people were used and many abandoned with the disease so that the medicine could be tested for the sake of the rest of the world. Is this how far we should be willing to go? Absolutely not. But how far do we have to go to solve such serious issues?
Freedom of choice is a matter of immeasurable value these days. For anthropologists, it means that a softer approach has to be taken when conducting research. The consent of the subjects is vitally important. In the Guatemala syphilis experiments, it was not so. The subjects infected with the disease had it done to them unwillingly, removing the choice from their hands. While it is easy to say any kind of research should require consent from the subject, it does provide a complex issue in a hypothetical situation. Considering the approach that the good of the many outweighs the good of the few, what should be done if a potential and perhaps even critically important subject refused to cooperate while the results could benefit many in desperate need? And who is to decide it?
While many questions arise when discussing ethical issues, it is difficult to define how research should be regulated. I do believe, however, that while human rights are and always will be an obstacle to research results, no harm should be done to subjects and none should be experimented on without their consent. There will always be problems with defining how much good justifies unethical actions.
What The IRB Should And Should Not Be Able To Do
The Institutional Review Boards (IRBs) currently have too much power in deciding what research can be done or not done. While many people believe that any experiment or research that deals with human test subjects should be extremely regulated, that is incorrect. In order for our society to gain information to help solve current and future problems, researchers must be able to do more than they are currently allowed to do by the IRBs. I suggest that regulations should be kept in place for anything that involves changing the physical or mental state of a human test subject, but reduce the levels of standards of what is allowed and not allowed. I also suggest that the IRB should not have any regulations over interviews of people.
I suggest setting more relaxed regulations on tests that involve human test subjects because if we want to learn how to help others and ourselves now or in the future, we must discover what will and will not help. This can only be done through trial experiments on those human test subjects. The regulations, without question, must of course protect the dignity as well as mental and physical health of the person. Any testing that requires altering a person's mental state or physical state must be looked upon by an IRB in order to ensure that it is ethical to do. Things such as the Guatemala Syphilis Experiment should never be allowed to happen again. The IRB must be able to find that any research that involves testing on human subjects will result in the safety of the test subjects and information that can be used to help human beings. It must be required that test subjects not only agree to what they are being subjected to, but that they know what the information the research will hopefully yield as well as any possible effects that the testing could have on them.
On the subject of interviewing people, there should be regulations or powers to regulate in place by the IRB. Through interviews, researchers are attempting to gain a general image of what a society believes or how it acts. Researchers should then, have the freedom to perform any interviews that they want with approval of the subjects. If a subject is under the age of 18, then parental consent is then required as the only regulation in place. The society in which a researcher is performing these interviews should be the one that decides what is able or unable to be discussed. If a certain society sees it as inappropriate for a man to talk to a woman (or vice versa) about something such as marriage, then the researcher would then be confined to his own gender. The IRB should not be the ones in charge of what is or is not permitted in interviews. The consent from an individual (or guardian's consent in the case of minors) to be interviewed on a certain subject should be the only required guideline in conducting said interview. Anonymity for the subject being interviewed should always be offered as well.
If the Institutional Review Boards reduce the level in which they have their regulations in place with testing on human subjects, then researchers will be able to gain more information that will allow the aid of current and future problems humans may encounter. The IRB should of course monitor who is in charge of these tests as a prestigious research field should have a prestigious researcher. Deciding on if someone is qualified to perform an experiment should be left to the IRB. Interviews on the other hand, should in no way have any restrictions placed on them by the IRB. The consent of a subject to be interviewed is all that should be required for the interview to commence. The culture of the society the test is being administered in decides what is morally correct for people to talk about. Of course, anonymity must be available for all test subjects no matter what they are involved in doing.
Ideal Rules for the World of Anthropological Research
When it comes to anthropological research, an important factor to consider in order to not violate any human rights is that of boundaries. In the past, anthropologists have neglected to consider their research's effect on the subjects or those around them. Such things are supposed to be regulated by the Institutional Review Board (IRB) in the United States and the Review Ethics Boards (REB) in Canada, but it is clear through the examination of past exploits in both countries that a concrete and universal set of rules must be established for the benefit all test subjects or all of those who may be directly or indirectly affected by the research done by anthropologists.
In the case of the research done in Guatemala done by the US in 1946 to 1948 on syphilis and other sexually transmitted diseases, not only did John Charles Cutler violate the boundaries that ought to have been established between himself and his test subjects, but he, in result, killed many innocent people. If the IRB had an established rule that prohibited human experimentation without full disclosure and informed individual consent, it would have prevented the many people who were being infected without their knowledge. If there were also a rule that forbade the experimentation on people when it could possibly endanger their lives- which this particular experiment definitely did- then those who failed to receive the treatment that could have possibly survived. Finally, in the case of medical studies, exclusively, there should be established rules that requires the test subjects to be guaranteed a cure or treatment to whatever they are exposed to in order to preserve their health and, in more extreme studies, their lives. Of course, this last rule could be disregarded in the case of those who knowingly volunteer for such dangerous studies with an understanding of the possible results, in which case their mental health ought to be considered as well.
The case between the Huron-Wendat Nation in Ontario, Canada and Louisiana State University regarding the bones dug up by a research team at LSU brings up a moral dilemma. While those at LSU may have dug up the bones at the study, the Huron-Wendat claim the 500 year old bones as part of their culture. The dispute that arose from this situation could have been avoided if the IRB and the REB both had established a guideline for natural remains dug up during a study. Such a rule could be that any remains that are found ought to be documented so that whoever conducts the study may notify the government over which the land is run by. Before the bones are taken back to any study in the group's home country, they must be carbon-dated in order to determine if it will cause any disputes with the local people, who must then be notified and asked for permission in order to take the remains. Going through these procedures may keep different cultural groups at peace with one another and, in result, will make the research process free of international disputes.
A last situation that must be considered would be when a researcher is trying to interview certain groups. While there are already established rules that are supposed to respect a person's boundaries and beliefs, such rules actually inhibit the interaction with whoever is being interviewed. In order to fix this, the only solution that comes to mind would be to respect the cultural norms of the individual and attempt to talk to them as an equal individual. By treating each person as a "special interest group", it makes talking to other people more difficult. If one were to simply respect whatever cultural norms and expectations are present, it simplifies the situation. Interfering in a person's personal life or treating the person being interviewed as an experiment would make interacting with that person much more difficult and could give the impression of disrespecting the individual and their culture.
The IRB and the REB have already established certain rules and guidelines for the interaction between researchers and those who their research may affect, but there are other rules that ought to be implemented for cultural understanding and cooperative interaction between the various peoples.
Keep It Ethical
The boundaries of human study and experiment have been distorted throughout
history. Multiple times we have seen experiments that have been detrimental
to the health of the participants, and when their lives are forever damaged
by our scientific curiosity then we have lost some sense of humanity. It
is our moral obligation as researchers to only conduct research that provides
benefit to everyone, and not just those who get to view the result and
the end. However, many will forever see that forms of regulation only slow
down the research process and make some results impossible to achieve.
The Pursuit of Knowledge: Pleasure or Chore?
While the broad rules set by the Institutional Review Boards and the Review Ethic Boards seem to be extensive enough to establish ethical research methods, there are flaws within the system itself. Improvement is needed with the way the boards enforce their ethical research methods now that they have established standards for research methods. While the review boards do their best to promote positive benefits for the societies researchers study, they often inflict unnecessary hardship onto the researchers, making the pursuit of knowledge a chore rather than a pleasure.
The Review Boards of the United States and Canada have similar standards that seem fair to researchers and those the researchers are working with. "Respect for Persons, Beneficence, and Justice" is how it is phrased in the National Research Act, and these three concepts form a good summary of what the two boards try to accomplish while monitoring research. These three ideas encompass important ethical concepts such as requiring informed consent, ensuring confidentiality, establishing mutual trust between anthropologists and those they work with, and working towards maximizing benefits while minimizing harm in every field work study, to name just a few. It is clear that society has seen problems with studies that do not conform to these three main principles and their corresponding sub-ideas. This is clear when an average citizen examines past experiments such as the Guatemala Syphilis Experiment, where people were unknowingly infected with syphilis for the sake of studying the disease, and the study regarding malnourishment in schools, where children were starved to provide a control group. Upon reading these, anyone would be appalled and outraged because society today has taught us that these experiments were unethical and morally wrong. These experiments violate almost all of the standards that the boards have set, and evaluation of these two research projects highlight the leaps and bounds that anthropological research has made as fair as ethical practices as a of the establishment of the review boards of the United States and Canada.
While significant improvement in ethical standards is obvious since the emergence of anthropological research, now the system of enactment needs to be fine tuned. While the boards do their best to ensure fairness to those the anthropologists work with, now the boards must take fairness to the anthropologists in to account. As Laurie Essig states, "IRBs have effectively shut down our ability to actually find out about people's lived experiences. IRBs have treated speaking with someone as equivalent to experimenting on them and have almost killed fieldwork in the process." The lines have been blurred as the boards make questionable decisions that seem to do nothing but inhibit the pursuit of knowledge. This is exhibited by Essig being called in because she failed to treat transgendered people as "vulnerable population," which includes prisoners, the terminally ill, children, and people with mental illness to name a few. The board claimed they fell into the category of mental illness. In a society pressing towards social justice, this seems like a complete injustice to the anthropologist for being punished for trying to pursue social justice by understanding the struggles of a group of people who are trying to be accepted into a changing society, not a protection of the subjects being studied. While it is hard to objectively categorize something as subjective as who is vulnerable, it seems that the board needs to evaluate the effects of their subjective regulations in a changing world.
In addition to interpretation of the board's principles, the time frame and application process seems to cause curious researchers nothing but headaches that may prevent them from acquiring the knowledge and research that they are passionate enough to chase. Mitch Smith points out that "something as simple as spelling errors" can halt the entire application process of obtaining IRB approval. The applicant will then be sent back their application, and be forced to fix the smallest detail and re-submit their application. This can cause the application process to be so lengthy and difficult that it very may well detour some anthropologists from carrying out fieldwork that may have potentially had a great impact on the discipline of anthropology as a whole. The review board seems to be abusing its power and making the pursuit of knowledge more trouble than excitement. This is where one needs to take a step back and realize that something needs to change with the enforcement of the review boards.
While ethic review boards have prevented countless possibilities for pain, suffering, unfairness, and harm, they also make the quest for knowledge arduous, drawn out, and sometimes impossible. Review boards have come a long way in protecting people from researchers, but it's time to take a look at protecting the rights of researchers to seek knowledge uninhibited, if their fieldwork is in fact ethical by all standards set by the boards. The boards need to recognize that the field of anthropology has changed and give researchers the ability to carry out research that often strives to promote positive benefits for the larger society, not harm it, and give researchers more freedom in conducting their fieldwork.
What "Good" May
There is a 1980 underground horror film called Cannibal Holocaust in which a group of young documentary anthropologists travel to the deep Amazon rainforest to study a cannibal tribe. Before receiving a fitting fate for horror movie characters, the group conducts their "study" by terrorizing the tribe and burning down their homes.
The point is that this incident may be farther-fetched than most real incidents, but it is still not far enough away from the truth. The problem is that these occurrences happen, though maybe not often. When they do happen, though, the incident becomes a crisis, a national issue. This would be on top of other crises, such as school shootings, or global issues, such as genocide and war.
The world has enough on its plate as it is. This is why international
review boards are in place, in order to ensure that these types of global
issues do not occur again. IRBs are there to protect those with the lower
hand, the tribes and cultures who are the subjects of anthropological study.
Before any study can be made, it should be the number one priority of both
anthropologists and IRBs to protect the safety and well being of the subject.
IRBs and their regulations are absolutely necessary.
Similarly, there was around this time a Canadian experiment where bureaucrats subjected hungry aboriginal children to testing that altered their diets and took away dental care simply because it would have distorted results. These are two instances of human abuse for the sake of science, yet both of these incidents are cited in their case studies as having nothing written about them. The killing and near-torture of others was done in vain, not in the name of science.
It is true that both of these studies took place in the 1940s, a time when IRB regulation was not as restrictive. However, it is still important to imagine an incident such as this taking place today; a person abusing the basic rule of anthropology to "do no harm" slipping through the cracks of a review board. The outcome would be devastating to the field of anthropology as it is viewed by modern society. Not only this, but if it meant the lives of innocent subjects, such an incident would be viewed as the national crisis described earlier.
With this being said, protecting human rights should be more important
than the research studies turned down by IRBs through regulation. Laurie
Essig ran into such an issue when doing fieldwork and interviewing transsexuals.
She expressed her frustration with the IRBs and how they made Essig's work
difficult, if not impossible, as her subjects were not willing to open
up to her due to the regulation. This leads to the next point.
With careful review of the plan for research, the IRBs would be able to make a distinct difference between the studies that may harm human rights, and the studies that actually have potential to "do good" without violating these rights. This would mean an extremely intuitive review, not focused on the inconsequential issues like word misspellings (as pointed out in the "Behind Closed Doors" Q&A). Instead, it is a need to streamline the IRBs to eliminate inconsistencies within the institution, whether this takes a rewriting of the basic rules or a team of board members more in tune with each other and the instinctive to "do good" and "do no harm" at the same time.
It is evident that regulation is needed in order to protect basic human rights and the integrity of anthropology itself. The important part is recognizing this fact; the next part is taking it into the future where the field of anthropology is changing, and ensuring that reviews focus more on the outcome of the research rather than minor discrepancies. In doing so, anthropologists and IRBs will not only coexist peacefully, but work together to bring something truly "good" to the world.
The Necessity of Regulations
Regulations and control are absolutely needed to ensure the quality and safety of research. In the 1940's United States Public Health Service physician John Charles Cutler conducted experiments in Guatemala in which doctors "infected soldiers, prostitutes, prisoners and mental patients with syphilis and other sexually transmitted diseases." The two critical aspects to take into consideration when evaluating the necessity for regulation in this case are that the researchers did not gain informed consent from the subjects and that information was hidden from the Guatemalan officials. The overall intent of the study, determining the effectiveness in treating there diseases with penicillin, would have been a valuable addition to their knowledge of treating sexually transmitted diseases; however, these people were infected with diseases, many of which are fatal without treatment, with either no or false knowledge and only 26 percent of them were given treatment. If a review board had been in place then this "crime against humanity" would have never occurred and many lives could have been saved (Guatemalan Syphilis Experiment).
All throughout our national and global histories we hear atrocious accounts of researchers conducting research that harms the lives and lifestyles of its subjects, their families, and the communities in which they came from. Many have questioned how they could do such things and how their colleagues could stand idly by when such events were happening. However, these researchers justify themselves in saying that it is in the name of research and furthering the worlds knowledge. Researchers often forget that there is no life that is 'expendable.' This is why, in the second half of the twentieth century, many regulations were set in place to make sure that all human beings involved in research are not harmed in any way. They understand that relying on personal ethics is not enough to protect humankind. Some of the most important aspects that these review boards take into consideration are that the subjects are not harmed and that "risks to subjects are reasonable in relation to anticipated benefits" (Code of Federal Regulation Ã?Â§46.111) and are minimized, and that informed consent is obtained. Researchers should be allowed as much freedom as possible in their research if they follow the guidelines that the review boards have to take into account when approving research. While new discoveries are important, they should not be made at the expensive of human life.
Some believe that those who are in charge of approving research are inhibiting research when they take each element into account, such as "typos and written mistakes" (Behind Closed Doors). While it is very understandable that these people would believe that something as trivial as spelling mistakes should not kill an entire research project, it is one important way that the review boards can gage the effort and attention to detail that the research will display when executing their research. If someone's proposal has errors, how much more likely is it that they may switch treatments plans for two subjects or make any number of errors on a subject's case? The researchers made errors on something that they knew would be carefully scrutinized, which sends a clear message to the review boards how carefully the researchers will conduct their experiments.
One regulation that should be a priority is informed consent and respecting that consent throughout the research process. Of all of the scandalous behaviors to do during research, lying to the subjects and not treating them as "autonomous agents" (Belmont Report of 1979) could be selected as the main violation of ethics in misconducted research. This is a right of the subject and should absolutely be an obligation of the researcher. If a researcher specifically avoids informing the subject on all that is happening, the research being conducted should be evaluated by another to ensure the safety of the experiment. Informed consent also helps to ensure benefits for all parties involved, including that relationships between the researchers and their subjects will remain positive so that the researcher can continue to be in good standing. This also will decrease the risk of the subjects lashing out against the researcher with many issues arising as a result.
Another regulation that should be enforced is that the risks of the experiments are minimized. While there is much research that could be done, some simply are accompanied with too many risks that would greatly outweigh the benefits. One thing that researchers sometimes forget is that human life is not expendable, no matter whom one is talking about. Research should not be justified if it risks human life with no hope for a return to safety. Enforcing this regulation could have saved many lives if it were enforced at the time of the Guatemalan Syphilis Experiment. Another important aspect to consider with this subject is that decreasing the risk of an experiment will increase the amount of interest and participation in the research. This will greatly benefit research as a whole as people will be more willing to perpetuate research.
Research is what continuously brings science and everyday human life into new phases of understanding and knowledge, but regulations on this research are what bring us into new phases of enlightenment. To achieve this, the researchers must not be allowed to decide the fates of others. Regulations, especially informed consent and reduced risks, and review boards are absolutely necessary to ensure that the most beneficial research is taking place and that human life is protected.
Institutional Review Board: The Only Way to Safe Research
In my senior year of high school I recall watching a video in my psychology class about the Stanford Prison Experiment, and the lack of ethics behind it. This experiment was a great example to the lack of ethical concern, mainly through the harming of the participants in both physical and psychological ways. The researcher conducting the experiment did end the study short; however, the damage was already done. Researchers should be required to consider all potential consequences when planning out their experiments and research so they can make sure they aren't causing an unethical damage to participants. This is why we can appreciate the Institutional Review Board, for making sure that up-most safety can be assured and can save the reputation of both, the researcher and the review board. The Institutional Review Board should not be looked down at because they are helping to insure the safety of everyone, even if people look down at them for believing they are too strict on detail; they're doing it for better, safer research. They deserve to have all the control they do have and shouldn't need to loosen the reigns.
The rules that the Institutional Review Board have set in place for research projects are very reasonable and shouldn't be looked at in a negative manner. Take for example; "minimal risk to subjects," there is no reason for a project to be like the "Guatemala Syphilis Experiment," and risking lives in such a careless manner. In this experiment, the United States had injected 1,500 test subjects with syphilis, all without informed consent, which lead to the death of 83 of the subjects from lack of antibiotics and therapy receive. When looking back at this experiment, the current director discusses how, if they had the guidelines set in place by the Institutional Review Board like there are now, none of this would have occurred. There was a lot of carelessness in this experiment, and there was no sense of concern for the subjects who unwillingly were harmed and lost their lives. If there were the current rules set in place regarding consent, and minimal harm with an equally rewarded benefit, this test could not have passed by the Institutional Review Board, and many people would not have been subjected to that scrutiny.
Some people may be concerned that the Institutional Review Board has too much control over fieldwork research, and not allow potentially great studies due to some issues such as not capitalizing IRB when presenting the project. However, the Institutional Review Board is just looking to make sure that the researcher is going to be thorough in their research, and if they make simple mistakes when presenting their proposal, then what mistakes might they make in research? The Institutional Review Board is making sure the researches are serious and propose promising ideas that they can expect good results back from.
The Institutional Review Board wouldn't dismiss a good research idea if it didn't pose any potential threats; the people reviewing the research ideas are taking a stable stance and looking at all the possible outcomes to see if it's worth going out and doing. They also want to make sure the information being sought after will be strong enough to leave the researcher with good enough evidence to publish their findings and not have wasted their time doing that fieldwork. They aren't only trying to uphold a good name and protect the research participants, but they are trying to make sure that the researcher is going to get the best experience and results possible with minimal issues.
The Institutional Review Board has nothing but good intentions behind the strict rules they set in place in order to propose research ideas. Imagine you are a research participant; wouldn't you want to be ensured up-most safety when participating, and to know all, if any potential threats? Research studies need to be safe, secure, and serious, and the Institutional Review Board is there to make sure that this happens, and this is why we need the guidelines that they set in place.
Board Member Bias
In the ethics of anthropological fieldwork, consent of the people being
studied is paramount, not only for anthropology as a whole, but for the
accuracy of the study's results. Of equal importance, the Institutional
Review Board (IRB) and the Review Ethics Boards (REB) must be able to judge
each proposed research case based on facts alone. The IRBs and REBs should
mandate and enforce the action of completely informing the persons being
researched of the anthropologists strategies and goals. To better facilitate
this, the criteria for members of an IRB or REB should be stricter and
routinely enforced, to better keep personal biases and beliefs from affecting
the boards decisions.
A Happy Medium
Institutionalized forms of regulation and the extent to which things are
regulated have proven to be slippery slopes, especially so in recent years.
Many debates have arisen over such issues, as exemplified by heated arguments
over government regulation on economics and commerce. These arguments also
carry over to a degree on the topic of regulations on conducting research.
Much like any other arguments about regulation, arguments about the amount
of control the International Review Board (in the U.S.) or the Review Ethics
Board (in Canada) have over conducting research, and how strict the rules
that they set should be. As is typical of such a hot button issue, there
are extremes on each side of the argument. One side is to allow researchers
a great deal of freedom in conducting research in order to get more work
done and yield better results, and the other is to implement stricter rules
and harsher regulations in the interest of ethics and the concern for the
well-being of subjects. Due to the extreme nature of either stance as evidenced
by the given case studies, I would argue that a medium between both camps
would be the most beneficial course of action.
Simply put, my position is to implement a uniform set of rules and regulations for research, although ones that are not too restrictive or severe. There should be an emphasis on ethics, and informed consent should be a given, but regulations should not be so harsh that they impede research as a whole. A happy medium (in a sense) between strict regulations and freedom for researchers is the best way to solve this dilemma, and is the best course of action when considering ethics and the integrity of research and fieldwork.
Regulations in Research Are Made to Help All Humans
Anthropologists all have a goal to learn more about a subject, or culture,
through fieldwork, experiments, or observations. In order to do fieldwork
the anthropologist must submerge themselves into a certain culture to fully
understand the people in the culture. Also the anthropologist must go in
to their fieldwork with an open mind on to what they are studying. The
Institutional Review Boards (IRB) and the Review Ethics Boards (REB) were
created for reviewing work anthropologist's want to start.