Research is essential for the advancement of any field of study. Nevertheless, this becomes complicated when the object of the investigation is a human, as there is an accepted guideline that one should not do harm onto a person. In order to assure proper treatment of humans, ethical committees have arisen in many parts of the world, limiting the research that may be done. However, this comes into tension when one also takes into account the notion of liberty, as the two could contradict each other.
In this sense, some would argue that ethics committees should not interfere in the choices of competent autonomous adults who want to be involved in high risk research. This statement is obviously problematic, and it contemplates personal liberty over potential harm. The present study will contemplate the different positions regarding this subject: the ones that support this statement, the ones against it, and the complex notions that philosophers have, in order to reach an informed point of view in the conclusions.
The main reason for this is the attempt to ensure that these investigations are ethical. Research integrity is starting to be an issue again, as new methods of fraud detection have shown horrible results (Smith, 2008). Some, including Paul (2011) believe that fraudulent research should not be published at all. Therefore, the subject of whether people should be allowed to take part of research projects against the suggestions of ethical committees is important because it helps establish the correct way to investigate without harming others.
Arguments for Autonomy
The main argument for allowing people to participate in studies against the decision of ethics committees is that they are autonomous agents. The principle of respect for autonomy “is essentially the moral requirement to respect other people’s autonomy” (Gillon, 1985a, p. 1807). In this sense, most investigation ethics have the notion of informed consent, which is used to ensure that people are making a rational choice. “The purpose of informed consent is to show respect for the autonomy of individuals” (Emanuel, Wendler & Grady, p. 130). Therefore, informed consent would be the staple of autonomy when it comes to research ethics.
Informed consent basically has two characteristics: it must be voluntary and the person has to be informed (Wilkinson). The first of these has to do with autonomy, as has just been discussed. Nevertheless, another important component is that people understand the implications of taking part in the study. “Valid informed consent requires that the consenting person has the capacity to understand and make decisions, receives relevant information about the research study, understands that information, and consents voluntarily and without coercion” (Emanuel, Wendler & Grady, p. 130). Therefore, it is important for researchers to tell the participants what will happen in the study. Some people think that this is hardly ever met, as will be discussed later.
In addition, according to Beecher (1966), there are two main components of ethical experimentation on humans: informed consent and the safeguard of “the presence of an intelligent, informed, conscientious, compassionate, responsible investigator” (p. 1360). While the first is more common and understandable, the second is a somewhat circular and useless argument, as it depends on the competency and moral standing of the person that is handling the experiment. This would obviously not be a safeguard because an unethical investigator would not be words about the ethics of his or her experiment.
Gillon (1985b) also explores this through tan examination of the principle of primum non nocere. This is notoriously one of the hallmarks of medical ethics, yet he contends that it has not been interpreted properly. He argues that there is an essential difference between non-maleficence and beneficence and the people that this applies to. “All that follows is that the scope of non-maleficence is general, encompassing all other people, whereas the scope of beneficence is more specific, applying only to some people” (Gillon, 1985b, p. 130). Therefore, many people could believe that the ethics committee’s actions would also have to do with the experiment itself. Even though it may not do good to the person, this group of people has the moral obligation to make sure that no harm is done either. Therefore, some people could believe that when one takes the medical principle of primum non nocere into account, ethics committees should intervene so that people do not take part of high-risk studies, even if they want to do it willingly.
Nevertheless, this would be in the function of a higher cause, so it could be somewhat justified. “Medical practice often involves doing or risking harm to achieve a greater benefit for an individual—certainly the patients concerned would often vigorously contest a proposal that such risks should not be taken” as not doing harm has a priority over doing good. Nevertheless, he poses different examples, such as vaccination and taxation of the poor, that put this postulate into tension. Therefore, he questions whether this guiding light is sustainable at all, believing that it is structurally impossible to exempt everybody from harm.
Arguments against Harm
However, not everybody believes that people should be even minimally exposed to harm at all, arguing that people should not be allowed to harm themselves, even if they would like to. Therefore, they believe that people should not be allowed to take part of scientific investigations against the ethical committee’s deliberation. Even though autonomy is important, sometimes scientists have been known to inflict harm on their population through experiments.
There are a couple of these perversions of investigation that have become notorious, resulting in people having a negative point of view of science as a whole. “The point behind the widespread outrage about the research is that, even if there were genuine benefits, these were not enough to justify it” (Wilkinson, p. 15). Even though they understand that, in some cases, this was done for the greater good of humankind, it is not easy for some to justify harming, or even killing some, to help others.
In general, these scandals have led to such public scorn that different measures have been taken. For example, the creation of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was caused by the Tuskegee Syphilis Experiment, one of the most shameful episodes in recent American domestic history. This is a symbol of research malfeasance in which virtually every principle underlying the ethical treatment of human subjects of research was violated” (Jones, p. 96). Another important contributor toward the establishment of medical ethics was World War II. “Physicians and medical and biological researchers took a central role in the implementation of the Holocaust and exploited imprisonment, ghettoization, and killings as opportunities for research” (Weindling, p. 18). Therefore, these botched experiments, led by scientists and done in the name of science, have resulted in different regulations.
Even though autonomy is generally heralded as an absolute good, there are also many negative actions that can be done in the name of autonomy. Just because a person has liberty and reason does not mean that he or she will employ this in a correct way. In this sense, even some people that see autonomy in a favorable light would fight against considering autonomy to always be good. For example, Gillon (1985a) states that he is “disinclined to accept that autonomy is a virtue” (p. 1807); in this sense, he gives the example of a villain, how abuses of his autonomy in order to commit evil deeds. This could even be contemplated on the side of the scientists, who obviously knew that they were not doing the patients any good.
The notion of informed consent is, itself, contested. This is mainly due to the fact that the participants usually do not have the information necessary to make a qualified decision whether to take part of the project or not. In this sense, Wilkinson qualifies informed consent by saying that it “only applies to competent people, where competence requires, among other things, that they are capable of understanding the nature of the benefits and burdens of the proposed research and the probabilities of their occurring” (p. 16). Nevertheless, there is great reason to doubt that every participant involved in the study has this knowledge. While some may argue that it is their responsibility to be aware of the possible side effects of the trial, their medical knowledge may be so limited that they do not actually have enough of a notion as to what may occur after the experiment. In the end, informed consent is just a signature on a piece of paper, something that Pickering considers “meaningless” (p. 74) when the process of obtaining consent is flawed. An individual would probably not have the same medical and health information and knowledge as an ethics committee. Therefore, he or she would likely take an uninformed choice when going against the decisions of these experts.
There is also the case of different cultures, and attempting to translate what will happen in an experiment to societies that do not have the same notions as the experimenters. Hudson and Russel (2008) believe that “Ethical practice is based on culturally bound concepts that require discussion and negotiation in crosscultural environments” (p. 65). Through the study of research done on the Maori community, they attempted to traduce the ethical norms of the Treaty of Waitiangi to this indigenous tribe’s ontology. This obviously raises a big issue, as it would be almost impossible for the participant to fully understand what will happen in the process, as it takes into account a completely different point of view.
Philosophers’ Complex View
There is an obvious contradiction in these two points of view. “When conflicts between principles and benchmarks occur, or when different groups weigh the principles differently, the important point is to be clear about the reasons for the evaluation and the differences” (Emanuel, Wendler & Grady, p. 32). Therefore, it is important to take into account what philosophers have to say on the matter. Nevertheless, as will be shown with the case of Immanuel Kant, these applications of reason to morality are often ambiguous and not very helpful in deciding what the correct action to take is. As a whole, they would value autonomy, yet they would discourage a person to act in such a way as to lead another one to be harmed. Thus, it would not really be an issue of allowing the person to go through with the participation in the experiment or not, but the effects that the experiment would have on the person.
Perhaps the clearest point of view with regards to this would be Kant’s, whose philosophy is notorious precisely for not taking these circumstantial considerations into account. Nevertheless, there is some tension when one considers the difference between his exaltation of rational agents and his prohibition of taking people as a means. In this sense, many thinkers believe that Kant would be against allowing ethics committees to interfere with people’s rational decision to partake in a study. In this sense, Gillion (1985a) writes, “for Kant respect for autonomy was both a logically necessary feature of being a rational agent and also required that respect for the autonomy of any individual rational agent” as long as this did not interfere with other people (p. 1807). Therefore, if one takes his emphasis on the rationality of people into account, there are reasons to believe that Kant would have thought that ethical committees should not interfere on people’s decision to take part of an experiment.
Nevertheless, if one takes into account the fact that Kant stated that people should not be taken as an end, the experiment itself would be immoral. Even though an experiment may seek to help humankind, the fact that it treats them as an instrument is completely unjustified in every case for Kant (Gillion, 1985a). Therefore, it is not necessarily that ethics committees should not interfere, but that the experiments should not be done in the first place. “Clinical research is not an end in itself. It has an instrumental value because it generates knowledge that leads to improvement in health or health care” (Emanuel, Wendler & Grady, p. 127). One could then argue that ethics committees would hinder this type of immoral action, making their conduct correct, as the high risk experiment would not take humans as an end.
It is also interesting to note that, as stated before, there are authors who separate rationality from autonomy. For them, not everybody that is rational would fall under the category of autonomous, as there may be other forces at play, restricting their liberty. “It seems farcical to suggest that subjects who are deprived of basic rights like food, or who live under regimes where the most fundamental liberties are denied to them, can be considered to be autonomous simply because they are rational” (Zion, Gillam & Loff, 2000, p. 2). Even though they take a rather extreme example for this, one can see that rationality is not all that is important for a person to be able to take a personal decision. In the case of high-risk experiments, people could participate because they need the money. In this sense, even though they would be acting rationally, their autonomy would be coerced.
Conclusions
According to Paul, “the public's scepticism and distrust of the scientist and the researcher in medicine may be due to an overemphasis on understanding mechanisms and on developing new technology and to a neglect for evaluating the outcome of treatment” (1988, p. 538). Therefore, she proposes a change in the orientation of medical investigation as a whole. If researchers would try to find improvements in treatment, instead of the comprehension of the body, experiments like the Tuskegee disaster could have been avoided. By placing human health as the direct objective, less people would be harmed by experiments.
Another way that investigation could be improved is through the monitoring of approved research projects. This proposal, as seen in Pickworth (2000), would hold the ethical entities responsible not just of the investigation, but of its effects as well. This is especially important as Martinson, Anderson & de Vries (2005) has found that a third of their sample of scientists had incurred in scientific misconduct.
Therefore, I believe that it is generally important to change the way investigations are being conducted. First, it is important to take into account whether the investigation needs to be done at all. Furthermore, the information that people should be given should be exhaustive, if they are to be used at all.
Nevertheless, I do not believe that people should be able to bypass ethical committees. The latter are supposed to be integrated by experts in the field, and the participant will not have as much knowledge and information about the subject as they will. Therefore, I think that they should be held as the final reference. Liberty sometimes needs to be limited when people do not know what is good for them.
Reference List
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