Tara Brown, Austin Mathias, David Ariza, Danica Paz Violago, Nathan Philipps, Danyelle Lincoln, Kathryn Clark, Warren Kinson, Zachery Shipton, Kaitlin Loomis, and Zachary Ward
Read Their Op-Eds, Please Use Your Search Function)
Topic the Students Wrote On:
Based 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, that the research strives to promote positive benefits for the larger society sponsoring it?
A Necessary Evil? Government Regulation
The Good, the Bad, the IRBs
Whenever someone wants to research a topic they must first deal with an Institutional Review Board. An Institutional Review Board or an IRB is an organization that is designed to review all behavioral and Biomedical research that involves humans. These boards are there to be sure that every subject is well informed about what is going on and that the risk that is caused by the research is minimized. These boards also have very strict restrictions about what researchers can and cannot do. These restrictions need to be reviewed because it is limiting the effectiveness of some research and experiments that need to fall short of the extremes the IRBs want to protect research subjects from. By limiting the amount of risks that researchers can take, they are setting up barriers that make it nearly impossible to make advancements in some areas of research. Also IRBs are independent from the government and there for conflict of interest can arise and some test that may possibly bring harm to its subjects might pass through the IRB. IRBs need to be constantly reviewed by government agencies so that they can retain there credibly so that valuable research does not get mistaken for violent acts against humanity.
IRBs are limiting the fieldwork that researchers are able to do because of the strict restrictions that they place. IRBs have made asking someone questions on the same level of experimenting on them. Since they do not distinguish between the two researchers in more soft science fields have trouble getting their job done. As one researcher stated, it is even more upsetting that biomedical and psychiatric paradigms are forced onto those of us who come from fields, like sociology, that are fundamentally at odds with such paradigms. With these types of restrictions in place they are unable to get all the information they need for their topic because the people who they interview may not want to share with them if they have give up their personal information, especially for topics that they are embarrassed about or not really interested in sharing.
IRBs do have their benefits as well. They do what they set out to do and that is to protect research subjects. IRBs have requirements so that experiments do not endanger the people who are involved. The board reviews each experiment and either approved or denied depending on if they meet the requirements set or not.
Since IRBs are not all affiliated with one another there will be inconstancies between them. Employees will interpret the rules differently at each IRB, which will allow some experiments to pass a certain board that failed at another IRB. With this in mind how can someone be sure that their research actually harmful unless they go through every review board in place. This will take up valuable research time and be a waste of finical resources as well.
Even though IRBs benefit people who volunteer to participate in research, they are still flawed and need to make sure they look at every experiment in comparison to the field it belongs in rather then grouping it will all scientific fields. IRBs also should be more monitored by the government organizations they serve because some might be self-beneficial and let some dangerous experiments pass as well as fail some relatively safe research. Researchers and IRBs need to be on the same page so that people who volunteer for research projects do not get injured.
A Balance of Risk and Reward: the IRB
The progress of science has always walked a thin line; in the pursuit of knowledge risks must be made in the hopes that the rest of society may benefit. But at what point do the risks outweigh the benefits? At what point does research delve into depravity and what should be an experiment to help people becomes a cruel torture? The Institutional Review Board asks these questions every single day and strive to regulate researchers so that harm is not done to those who most need help. But is more harm done by being too cautious? In trying to do good, is it better to be safe or to take risks and potentially harm vulnerable people? As with all things, it is better to live in balance than to lean too far in one extreme.
Perhaps the most despicable incidents done in the name of medicine occurred in the 1940's. With the intention of treating horrific diseases, doctors willingly allowed and participated in experiments such as the Tuskegee Syphilis Experiment whereby rural African Americans were forced to endure the full ravages of syphilis without any treatment or help. Another experiment called for doctors to infect and observe Guatemalan prisoners with venereal diseases. The rights of these human beings were blatantly ignored and viewed as small price to pay for the chance to learn more about diseases that had, by that time, already had effective treatments available.
On the other side of matters, we have far more innocent experiments; social surveys where researchers ask personal questions to select social groups. Yet the attempt to keep these people anonymous and protected is enough grounds for the IRB to outright shut down further progress. A question that surrounds the lives of an atypical group of people is heavily scrutinized because these individuals are "vulnerable". Thus, a group that would like to study vulnerable peoples would be restricted because they wish to study vulnerable peoples; a paradox created by bureaucracy.
What can one do, then? Should regulations be loosened so that actual progress be made, or should things remain just as they are lest the scientific community finds itself complicit in another Tuskegee experiment? One sociologist noted that it was frustrating "biomedical and psychiatric paradigms are forced onto those of us who come from fields...that are fundamentally at odds with such paradigms." Perhaps we can find a balance by ensuring that the measures we use for one field are not the ruling stick by which all research is done. Splitting the IRB into separate committees/spheres of influence would allow those like anthropologists to ask questions without fear of being dismissed while still upholding medical and psychological fields to the rigorous standards they rightfully should maintain. Such a measure would most likely be initially difficult to implement; determining what research most accurately fits what fields would be a complicated task and further determining what rules and regulations should guide each field would be adding greater complication to an already massive regulatory body. But it would still allow each research to be more accurately measured to standards that best befit the questions it is asking and trying to discern the answers to.
While we do not want such horrific violations of human rights that occurred in Guatemala and Tuskegee, we also do not want to hurt the progress of knowledge when the researchers are both well meaning and unharming. We want a balance between risk and safety of an individual, to do right while still having ability to act for good. Measuring these experiments relative to the harm they could cause rather than one universal standard is the ideal.
Human Rights Violated
Based on the information presented in the five case studies, the Intuitional Review Boards and/or the Review Ethics Board should enforce a set of common rules in regards to research. By this, I mean that participants should not be forced into a study; rather, their participation should be strictly voluntarily. Also, it is the researcher's obligation to ensure that their participants' rights, health, and safety won't be violated during their research; that is, that the researcher's experiment is purely ethical. The researcher should also follow informed-consent policies; the researcher should go into detail with their participant about their experiment process and make sure that the volunteers are knowledgeable of all relevant risks and benefits in regards to their experiment. Should the volunteer decide that they are not comfortable with the proceedings of the experiment after the informed-consent process, he or she should freely be able to withdraw their participation. Should the individual decide to proceed with the experiment, the individual should be informed of the researcher's confidentiality and privacy policies.
Researchers should be allowed freedom in their studies, but to a certain extent. Again, a researcher's experiment should be purely ethical in all circumstances. The researcher should have their participants' best interests in mind and if and when their study gets to a point where their volunteer's health, safety, or privacy may be compromised, the researcher should end the experiment at all costs.
Furthermore, to prevent the abuse of research subjects, participants should be aware of all the risks and benefits associated with the experiment they are partaking in. In regards to Case Study 1, subjects of the Guatemala Syphilis Experiment were infected with syphilis and other sexually treated diseases without the informed consent of the subjects. Blatantly speaking, these research subjects were not volunteers but were rather human bodies used for experimental purposes. These victims did not give their consent to participate in this experiment and were not aware of the health risks associated with the experiment; therefore, the experiment conducted was in fact of violation of human rights. Not only were subjects unknowingly infected with sexually transmitted diseases, but many got sick and died because of this experiment.
To ensure that research is contributing to the greater good of society, researchers and scientists should take into consideration the demographic they are presently studying. Researchers and scientists should not risk the health of their human subjects in order to analyze or prevent the progression of a disease. Also, researchers and scientists should not take advantage of the marginalized groups of society. Conductors of human experiments should not deprive anyone of their rights; societal factors (or lack of) should not determine human participation in a study. Researchers and scientists should not have to go to the extent of deprivation, of any kind, to realize that their study is unethical. Referring to Case Study 5, aboriginal populations of Canada were used as "unwitting subjects in nutritional experiments." Discrimination was obviously imposed onto the aboriginal communities of Northern Manitoba, Canada; because of their lack of status in Canadian society the aboriginals were by default, used in this experiment. Some populations suffered through nutritional supplement deprivation for the sole purpose of scientific research. However, in the case study, it was proclaimed that "not much was learned from those hungry little bodies" and that there wasn't any evidence of the research program ever being completed. Concluding to the fact that human rights were yet again violated. This experiment did not contribute to the greater of good of society; the only thing that was achieved throughout this experiment was denied resource accessibility. Researchers had the opportunity to help these communities, but instead, they used their power to deny members of oppressed societies the resources to better their health.
Finally, it's important that the government establishes a common set of rules that the Intuitional Review Boards and/or the Review Ethics Boards must follow in regards to research. Regulations should be enforced so that it ensures that the participants' rights won't be violated. A common set of rules should be enforced because it not only protects the participant from being physically, mentally, and emotionally harmed, but it also ensures the participant that the researcher's experiment is humanely ethical.
Properly Consenting to Proper Science
Scientific advancement is what truly separates humanity from all the other organisms that populate Earth. Our ability to experiment, learn, and advance technologically has increased the quality of our lives and allowed us to continually conquer nature. Sometimes, conducting proper science comes at a cost, but it is almost always worth it, and the benefits of knowledge to humanity outweigh those of security. Human rights, including that to life and health, are significant, but the art of consent can work around them. Thus, we must be allowed to conduct our research as long as it is done in full awareness of the experimentee.
As a U.S. citizen, the focus of my op-ed will be entirely on Institutional Review Boards (IRB), and thus, no references to the Canadian Review Ethics Board (REB) shall be made. However, all suggestions this op-ed will present toward the IRB are implicitly also directed toward the REB. Also, I seem to have written this in pseudo-legalese. No, I don't intend to be a lawyer; legalese is simply a great device for conveying information as bluntly and specifically as possible.
Researchers for the IRB must be allowed to conduct whatever medical research they deem must be done, granted that it is fundamentally legal. However, if they can make a convincing case for the benefit of illegal activity, they may be permitted to do that. However, the one activity they truly cannot do, and thus, cannot be permitted to do, is to conduct such research on those who give no consent. As long as the test subjects consent to the research experiment and are fully aware of what the experiment entails, then they may be subject to anything that was specifically engendered to them prior to consent.
The significance of consent is technically only required for living, human subjects, however. IRB researchers may be able to fully conduct any experiments on non-living or non-human articles. However, even then, they must have first made consent with whomever is generally in charge of them. Id est, in Case II, full consent must have been made with the tribe who historically possessed the persons' bones. This process must be done meticulously and diligently so that both parties are open about their intentions with one another so that full comprehension of their circumstances can be made.
Meticulous amounts of bureaucracy must be in place to ensure that these standards are met. I know that everybody hates dealing with it, even those within the bureaucracy itself, but things must be done carefully so that consent is always achieved before experimentation or research can begin, the rights of the experimentees are never abridged, and their knowledge of the experiment is comprehensive. Cases III and IV do make cases against the excessive use of meticulous bureaucracy, but this is virtually required to fulfill the suggestions laid before. It is far more important that someone isn't given syphilis than that they have to convince someone why being transgendered isn't a psychological disorder. That being said, the individual cases of Cases III and IV can be specifically addressed by improving the bureaucracy to remove hypocrisy and redundancy.
The extensive bureaucracy I propose should be able to control the problems with the abuse of research subjects and experimentees. To my understanding, IRB researchers will inherently only try experiments or research if they fundamentally want to learn something. As virtually anything they learn serves to benefit humanity, not much must be done to ensure that members of the IRB are integral in their actions. Thus, the IRB will be able to conduct proper science in a human-rights-friendly manner, allowing humanity to continue to scientifically advance and continue our stay as the dominant species of Earth.
IRB: When is it Helpful, When is it Hatmful?
There are few things in this world that draw as much criticism and moral questioning as human experimentation and study - be it in the medical field, archaeological field, or for purely academic studies.
In the not so recent past, there have been many cases of ethical breaches in basic humane treatment of test subjects. For example, the Guatemala syphilis experiment, where subjects were, unknowingly to them, infected with the disease, and the Tuskegee syphilis experiment, where subjects were not treated so the disease could be observed - both of which have had their ethical conduct equated to that of the Nazi medical experimentations on concentration camp prisoners.
Other criticisms are thrown at people conducting surveys of certain populations - not protecting anonymity of the subjects, for example.
When it comes to human experimentation and study, researchers have frequently demonstrated a blatant disregard for human life and personal privacy, and they frequently offend the beliefs of the people related to the subject area. Because of this, the IRB was created to make and enforce regulations that would ensure that all subjects are being treated ethically. These rules, however do lead to some problems.
Researchers have a difficult time conducting research on any human subject, and while some of the rules and regulations are definitely warranted, others are completely ludicrous. When it comes to the human experimentation, I feel as though most of the regulations put forth by the IRB are indeed there to protect a patient's or test subject's safety.
Informed consent is by far the most important item in these, and should be enforced, without question, in any and every situation - forcing drugs, procedures, and testing on an unwilling subject is the epitome of unethical treatment. Informed consent states that the subject must know the information behind the experiment, know the benefits and risks, and they must agree freely to participate. The subject is definitely entitled to know what researchers/physicians are looking for, or what drugs or going to be given to them, or what procedures will be performed. Having a say in what happens to your body is crucial. Just think, had the subjects in Guatemala known that they were part of an experiment that would infect them with a potentially fatal disease they most assuredly would not have agreed to the experiment.
The IRB states that whatever a researcher or physician does it must outweigh all the negative effects with positive effects. It's a nice sentiment, however, the world is rarely clear cut, or as black and white as the IRB would like. A person with a potentially terminal illness could benefit greatly from an experimental treatment, however they are denied this because the IRB is far too concerned with potential legal ramifications (should the treatment not work) to approve this.
The next, and by far the most ridiculous IRB stipulation is the protection of vulnerable parties in an interview situation. What counts as a vulnerable subject group? Children, pregnant woman, Hispanics, African Americans, the LGBT community, teenagers, senior citizens, people falling into the lower class category, etc. So who can be surveyed in America without making researchers jump through IRB hoops? Apparently just white people in the age range of 20-40. This is problematic because not all research is applicable to that narrow group of individuals, and not having, at least relatively, easy access to the preferred subject group greatly hinders the research and information potential.
Protecting an individual's identity and personal safety throughout the interview is definitely important, and is an IRB rule that should be enforced - an interview where names are not written down in any fashion would be ideal for protecting anonymity. However, wasting a few trees worth of paper to get the necessary approval to ask children their favorite color, if mothers plan to breast feed, if teenagers are having sex, and how LGBT feel they are treated in society, hardly seems reasonable. These are questions that are posed daily between friends and colleagues - why then is it such a bureaucratic nightmare for researchers to ask these same questions? I feel as though it is because some IRB board member views these questions as taboo, such as the example with an IRB board member declaring the LGBT, "have gender identity issues," and that the researcher must "find a way deal with [their] mental illness," before conducting the interviews. This seems like more of an example of bigotry on the IRB's part than as a means to protect the interviewees.
Obviously some of the rules put forth are important for making sure researchers and physicians aren't abusing their power and forcing their will on their subjects, however, the IRB does take some of its rules to absurd levels. Guidelines for ethical treatment are needed, but researchers and physicians need a little more freedom to conduct innocuous studies/interviews, and be able to use their own judgment, in some situations, when it comes to treating patients.
Rules Are Made To Be Rules
In terms of medical and scientific advancement, where we stand now in these areas could not have been accomplished if it were not for experimental research. As with everything that may cause harm to humans it is morally correct to have a set of guidelines to abide by in order to minimize the amount of harm caused to the research subjects.
The Institutional Review Boards or IRBs in the United States regulate the exact morally correct guidelines that all researchers must abide by in order to guarantee minimal harm to all test subjects. The question is how much regulation is just enough to ensure safety to all test subjects while at the same time satisfying the needs of the experiment, and the experimenter.
In order to approve any research project the IRBs must evaluate the project
based off of seven requisites that must be satisfied by the project.
Now, the ideas behind these seven standards are beautifully moral;
however, they are unfortunately ambiguous in that they are lacking
to avoid over regulation of these standards. While of course some
regulation is necessary, as I will provide specific examples of later
much regulation can stop scientific and medical advancement by restricting
the research to an unacceptable degree.
The first three case studies are examples of why we need restrictions
The second is "Subject to Aboriginal Experiments." This experiment was conducted by the Canadian government bureaucrats and was used on hungry aboriginal adults and children in order to better understand the effects of dietary supplements. The discovered and already hungry aboriginal peoples were starved while some were given dietary supplements instead of providing the actual food that the aboriginal peoples were lacking. Little substantial evidence can be found about this case; therefore, not much helpful information was extracted from starving other human beings.
The third is "Studying Old Bones-Preservation or Perversion."
This was a case where bones were extracted from the ground and transferred
to a museum, but belonged to a different cultural group then permission
was given from. Overall, the cultural group to which the bones belonged
believed that the soul could not move on, and would cause havoc to the
group until all of the remains of their body are buried.
The first is "Behind Closed Doors." This was an in interview with one of the insiders from the IRB. The first question that was asked was on the topic of how spelling errors from a researcher can play a role in whether the project gets approved or denied. The response to the question was that a spelling error can ultimately communicate that the researcher is not trustworthy and will therefore possibly have their project denied.
The second question was on the topic of very different responses from 18 different IRBs that reviewed the same research project. The response that was given stated that "This finding goes to show the many ways in which IRBs can interpret the laws."
The last case study is "The IRB And The Future Of Fieldwork." This case refers to a particular issue in one of the IRBs rules. The researcher attempted to conduct an anonymous survey but because of the IRBs rules where there must be documented evidence of informed consent, the research subjects were put off by having to sign a piece of paper with their real name on it, when they were promised that the survey was going to be anonymous.
I believe that rules are made to be the same rules for everyone and everything. That they should be specific and not ambiguous and able to be interpreted by whomever chooses in whichever way they choose. I do agree that there must be informed consent based on the previous case studied I have discussed; however, if it is not a physical experiment and wishes to remain anonymous then I believe that the test subject willingly answering the question itself is enough informed consent. On the other hand, I do agree that in order to be culturally sensitive when researching or experimenting with remains or persons that there must be written informed consent.
The research rules must not be interpreted so strictly that it stops the growth of research and experimentation in science and medicine altogether, because without previous research we would not be as advanced in these areas as we are today.
Restrictions Will Destroy Anthropological Progress
Anthropology and more specifically public anthropology exists in order to gain an understanding of all cultures of the world and thereby help solve major issues in our world. There was a time when anthropologists practiced armchair anthropology. They never went to the field but strived to understand what a culture was like through secondhand knowledge such as diaries and interviews with people that had been there. Then Franz Boas came along and helped propel research into the future by introducing fieldwork. The idea is that you cannot know a culture unless you can experience it first hand for a long period of time. This has helped us understand so much about other cultures and destroyed lots of prejudice and hate against different peoples. However with the massive restrictions now placed on anthropologists by the IRB's fieldwork is becoming massively hard to do. By placing so many restrictions on our research we are effectively taking a step backward to armchair anthropology.
Institutional review boards exist to "protect research subjects from unethical researchers". This is a goal that I think no one would argue against. Prior to The IRB researchers committed major human rights infractions as we see in the case of the Guatemala syphilis case. Had an IRB been in place that study would have never taken place and needless deaths would have been avoided. That being said, the IRB's have overstepped their bounds. The goal is to stop unethical research, not all research. In case four, Mitch Smith sits with an IRB while they are deliberating over applications for research. One of those cases drew the ire of one of the members because of a misspelled word. I would argue that this member is overstepping the bounds of the IRB. A misspelled word does not indicate if a researcher is ethical or unethical. It does not even show if that researcher is intelligent or not or careless or not. The people going into the field are not English majors. They are scientists and we should focus more on the ideas and cultures they want to study and how they want to study rather than how they spell one word.
IRB's are made up a series of people that decide if research is ethical or not. However there is no one IRB and this can create an entirely different issue when looking at ethical research. One IRB may see a project as unethical when another IRB may give it the green light. In case four, a particular project was given to 18 different IRB's and they all came up with very different responses to if it was ethical or not. Stated in the same case about human influence in the process is this, "...our everyday experience of the law is simply a product of how people enact the law and, specifically, how people with the power to apply rules that affect science and scholarship are, in effect, shaping what we can know and say for both good and ill". IRB's have moved from simply protecting research subjects, into deciding what we are allowed to know and say. By being so overbearing they make it nearly impossible to get any kind of real fieldwork done. Even talking to people needs to be approved and is rigorously looked at by IRB's. In case three Laurie Essig speaks about how many of her friends gave up on seemingly completely ethical research because the IRB made is so hard to get approval. And they weren't even experimenting. They were simply talking with people. She speaks about talking with transgendered people and how the IRB didn't take kindly to that. "When I suggested that from a sociological perspective, we all have issues with our gender, even the most normatively gendered among us, she told me I could come up with a plan for dealing with "those people's mental illness" or forget my project". Who in that conversation is being more unethical? Saying transgendered people have a mental illness and disallowing an anthropologist to speak with them is incredibly biased and ignorant. The job of the IRB is to protect people, not judge them. Would a different IRB have seen Laurie's research a different way?
I believe that the IRB should be there to manage how research is done and oversee that it is ethical, humane, and done with the people's full knowledge. Research should be done with the goal of bettering the human race and bettering the people that are participating. The IRB should not be allowed to tell researchers that the experiments or more specifically the field work they would like to do is "right or wrong" and emotion and biases should play no part at all. The IRB is an important structure that should remain in place but by killing anthropology in order to protect the people we are trying to learn about they are creating a more uneducated and biased public. If it is made so difficult to learn about different people we aren't protecting them. We are only setting ourselves up to reverse into times of armchair anthropology.
Drawing the Line: How Far is Too Far?
Field work and case studies are both vital to any type of research. An incredible amount of time and resources need to be poured into these case studies to yield substantial results. Should the practices we use to get this information have any restrictions on what someone can do as an anthropologist? Should we be allowed to conduct any type of experiment that is needed to benefit the greater good even if lives are ruined or lost in the process? The ethnocentrism of some researchers may lead people to think that the test subjects are of a lesser caste and therefore deserves less rights than you and I. I personally believe that a strict guideline based on ethics should remain in place (if not expanded on) to keep test subjects safe and so researchers can retain their humanity.
In 1946 the United States led a questionable experiment on Guatemalan
natives. The experiment consisted of transferring syphilis and other sexually
transmitted diseases to the test subjects without consent to test the use
antibiotics on these diseases. As a result 1500 natives were infected and
83 died due to this experiment. It is absolutely appalling that our government
would ever condone something as ethically and morally dark as this experiment.
Current President Alvaro Colom called this experiment "a
crime against humanity".
This experiment was conducted in a time when we had little to no ethical
guidelines for how experiments should be carried out. So if we ever decided
to rebuke or loosen the guidelines we have today what is there to stop
something as atrocious and out right evil from ever happening again.
It is incredibly important to keep a strong guide of standards and practices for researching within both of these countries. What does it say about our morality and values if we allow innocent people to suffer for information that helps our nations? It just seems insensitive and makes us seem numb and ethnocentric to rest of the world. We cannot live in a world where we put our needs above another group of people's needs. If we would like to retain our humanity then we need to keep the current standard of ethics or tighten them.
The Ethics of Research
Research is vital in the advancement of knowledge in every subject and area of life. Research is something that should be encouraged rather than regulated. However, within the field of research there is much debate as to where the lines need to drawn when considering the ethics involved in research. Guidelines for research need to be established in order to provide a framework for what is allowed, what is not allowed, and how information should be saved. After reading the five cases it is evident that much of the research conducted was not recorded correctly and now that information has been lost forever. Unregulated and unstructured research led to the unnecessary abuse of subjects that were unaware. Unregulated research should not be allowed because it is unethical, provides insignificant information, and causes harsher rules to be placed upon those who are researching in an appropriate manner. It is also apparent that guidelines placed on research should not be overly contractual or hindering.
Research such as that discussed in the Guatemala Syphilis Experiment should be considered unregulated research and should not be allowed. Deliberately infecting people with a disease just to see what happens in no way helps society or even advancements in knowledge that is significant. Forcing a disease or sickness on any healthy individual should be considered unethical. On the other hand, the research of diseases and its affects are necessary for advancement in science and medicine and is relevant in finding cures for diseases. Subjects for this type of research should be only those already affected with the disease and are willingly submitting themselves for observation. Research regarding medicine to see how it affects a certain disease should be done in clinical trials and should be regulated because it allows for the betterment of society and a greater knowledge of a significant issue. Research that provides useful information should be done but only by following a specific set of guidelines.
Regulations that should be enforced to prevent the abuse of research subjects should include those of not selecting a vulnerable subjects and making subjects aware of what they are getting into. The term vulnerable within the field of research should be defined as those who are incapable of thinking for themselves and those who do not have the option to say no. When saying those who do not have the option to say no I mean people who believe that participating in a study is there only option. In case three it is stated, "another acquaintance who used to research sexuality among young people has had to give it up since if there's one thing you can NOT speak with people under 18 about it's sex" which is not a group that should be considered vulnerable. If a person is willing to speak about their gender identification or sexual orientation they should be considered a willing subject. Calling people who are transgendered 'vulnerable' is instantly separating them from the general population and forcing a taboo upon them. Differences should be celebrated but considering groups 'vulnerable' based on their sexual orientation or gender identification would be a horrendous mistake. On the other hand, subjects of research should be fully aware of what they are going to be taking part in when submitting themselves for research unless the research is that of only observation without any sort of experimentation.
Research is the subject of much controversy because all research provides information that certain individuals find helpful or interesting but it is necessary for research to have rules and regulations because history proves that unregulated research leads to the unfair treatment of human beings. When conducting their research within the regulations given, researchers should be allowed free reign as long as the subjects have consented to the research and are aware of what they will be doing. Researchers should be allowed to record any and all information, as it is significant to their research and also to the people who will study their research.
Unethical or Unethical?
The safety of humans during testing today is a huge concern and often not allowed. Human testing can be seen as unethical and harmful to patients and absolutely has been in previous cases prior to regulations being set in place. Today the unknown is the most interesting in the field of science. Thus, when given the space doctors may take advantage not in violent manner but for the growth of the field of science. Just as in the removal of old bones in Ontario Canada. The field of science is always pushing the lines of ethical and unethical, however, its up to the individual to determine the severity of the issue.
One specific case where patient testing was abused is called The Guatemala Syphilis Experiment. In a 2-year period, the United States conducted a STI experiment infecting patients of all dissents and genders. Doctors infected soldiers, prostitutes, prisoners and mental patients with syphilis and other sexually transmitted diseases, without the informed consent of the subjects, and treated most subjects with antibiotics. A total of about 1500 study subjects were involved although the findings were never published. Francis Collins, the current Director of National Institutes of Health, called the experiments "a dark chapter in history of medicine" Overall unethical is the most accurate way to describe the testing of a potentially deadly STI on unknowing patients. However now today the only good coming out of this darker time is the birth of the drug penicillin.
Another case where the growth of science causes interference with human rights is the Louisiana State University removal of 200 peoples remains for the use of scientific research. Particularly when studying human remains, bones, and DNA treasure trove of clues to scientific, historic, medical and, sometimes, criminal puzzles. For the University to want to examine the bones is not unethical. The fact of the matter is that those bones are someone's remains and often some sacred religions believe the remains must be preserved for the circle of reincarnation to be completed.
Personally, I think Louisiana State University should return the "restless Huron souls" back to the earth only because the native people believe that is whats necessary. The Huron-Wendat believes buried bones are sacred because a persons soul rests with the remains; thus, replacement of the remains is necessary. When it comes down to the Guatemala Syphilis Experiment, there is not debate whether or not these occurrences should be considered unjust! Researches should have requirements set in place to prevent the harm of humans. Institutional Review Boards in the U.S. and the Review Ethics Boards in Canada should enforce a set of common rules regarding research. People should never be subjected to what the Guatemalan Syphilis patients went through. Research should be done only is strive to better society. For example is the syphilis experiment if penicillin was a know treatment for syphilis the patients the ones not imprisoned should have had the option to take the full dose. Times are ever changing and always evolving that "Darker time in science" should never happen again and I believe it's the job of our leaders to take care of its people bottom line.