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| − | <html>
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| − | <div class="container-fluid OurContent">
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| − | <a href="./Ethics.html"><img src="https://static.igem.org/mediawiki/2017/5/54/T--Wageningen_UR--HP_EthicsButton.jpg" /></a>
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| − | <div class="Results-Title">
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| − | <h1>Ethics</h1> </div>
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| − | <h4 class="panel-title">
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| − | <div class="col-xs-11">Risk Perception: What is safety? How important is it?</div><div class="col-xs-1"><i class="fa fa-arrow-down" aria-hidden="true"></i></div>
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| − | <p>
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| − | What is safety? Safety is the condition of a technology, in our case, that makes the user, the environment or any other individual to be free from any risk of suffering harm. How to determine how safe a technology is? In other words, how to determine the risk associated to a technology? There are to different approaches. On one hand we have the risk analysis, which studies the known risks and their probability under specific circumstances. An example of this approach is the identification of minimal lethal doses for chemical compounds used in the pharmaceutical and food industries. On the other hand, we have the risk perception, which considers a subjective approach, based on the perception on the individuals and the factors affecting this perception.
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| − | Another question that we can ask is how safe must be a technology to be used? To answer this question, we also need to consider the benefit that the technology offers. A population will consider to use a technology after making a judgement based on a comparison between the benefits and the risks posed by the technology. This judgement gives place to limits of acceptability in the legal framework. Therefore, for a technology to be used by the population, it does not have to be completely free of risk, but it has to be acceptably safe. The same way as risk perception has an important subjective part, benefit perception is also under the perception of individuals. As an example of battle between benefit and risk we can consider the cars. Although they are a dangerous technology which takes many lives in traffic accidents and can be used as a weapon in terrorist attacks, the benefit of an autonomous and fast mean of transport makes the population accept the technology even with its dangers.
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| − | There are many factors affecting risk perception which have been discussed to have a great effect. However, we are still not sure if the risk perception is mainly due to social factors, personal factors or technological factors. In my opinion, there are two factors which are important to consider, and which are related to each other. Moral acceptability and the attitude towards the technology link directly the subjectivity in the perception of the technology and not only the perception of the risk itself. The differences in the moral acceptability and the attitude among populations also show an important detail: People have different perceptions of reality. This is an important consideration, as the risk measured in risk analysis is considered to be the "real" or scientific risk. The clash of reality perceptions could be observed in the battle against the Ebola breakout: while the health authorities insisted that the corpses had to be burned, the local families saw this as an offense to their gods, which would cause the deceased to not be able to reach the life after death. As a consequence, distrust was generated against the health authorities which made the control of the disease more difficult. It is important to take in mind that for the local families, the risk of not seeing their loved ones in the afterlife was more important that the risk of getting infected. So we can conclude that talking about real risk can be misleading when debating with the public. Instead, analysis of the known risks could be a better alternative. Of course, there are unknown risks for a certain technology, which cannot be analysed or measured. These have mainly two sources: the risk that arises from intentional use of the technology for harmful purposes and the risk that arises from unexpected accidents or secondary effects.
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| − | Risk perception affects our life through laws based on the limits acceptability of the risks. In a democratic society there are three different sectors which have different roles when affecting the legal boundaries for technology. First, the general population which will have its own subjective risk perception. This perception will not always agree with that one of the experts, but that might happen for different reasons. On one hand, we have legitimate reasons, for example unexpected consequences due to the reductionist risk analysis performed by the experts. One the other hand, we will have illegitimate reasons that are based on wrong conceptions. For example, the population sector that believes that gluten is not good for health even if they do not have the Celiac Disease. Second, the scientists and experts will inform the population and the politicians about the risk analysis, and they will try to correct the wrong conceptions from the general population. Third and last, the politicians will make a decision and define a legal limit for the technology based on different influences. Some of these influences are: their own perception, the perception of the population, the feelings and emotions of the population, the advice from experts, economical pressure, religious pressure, corruption... Of course not all of these influences are ethical, but the situation right now is at it is. We can only hope that we evolve into a society where decisions are made through an open a public discussion among all the parties involved, where only the legitimate reasons will affect the final outcome.
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| − | <h4 class="panel-title">
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| − | <div class="col-xs-11">Transfer of Responsibility: Who has the responsibility of consequences if the device is misused?</div><div class="col-xs-1"><i class="fa fa-arrow-down" aria-hidden="true"></i></div>
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| − | <div class="panel-body bg-primary">
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| − | When a technology is being developed, it is necessary to carry out a risk assessment for the known risks that the technology poses. The result from this analysis will not be black or white, in other words, it will not classify the technology is dangerous or safe. It will place the technology inside an spectrum of safety. Therefore, the safety measures and their number that will have to be taken will depend on the position of the technology of this spectrum. The larger the risk a technology poses, more safety measures will be taken. It is advisable to take more safety measures than just the necessary. However, safety measures will also have a cost, leading to a technology that will be more expensive. This can have serious effects on some technologies, like Mantis, whose purpose is to be cheap to produce so it can affordable and reach the maximum number of people possible.
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| − | As a result, an evaluation is necessary between the risk the technology poses in the specific circumstances where it will be used (closed device, trained personnel...) and the cost of the possible safety measures. The rule that should be followed in these situation is the "rule of reasonability" that states that the producer should act as it would be reasonable not to. It would be totally reasonable not to spend thousands of dollars in a safety measure that might never be needed.
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| − | Another problem related to the responsibility is the inevitable transfer of responsibility to the end-user. There is no way for the producer to prevent that the end-user will misuse the technology, whether unintentionally or intentionally. For example, inappropriate disposal of the device or unethical use of the device for discriminatory purposes. However, the producer has several options to avoid undesirable consequences from the misuse of the device. For example, the use of a biocontainment mechanism would prevent ecological disasters even in case of inappropriate disposal. In the case of unethical use, the only option for the producer is the explicit description of the proper use of the technology in the instruction sheet or in the label. Furthermore, the producer can have a proactive role in the implementation of the technology, such as making sure that the personnel receives proper training or developing visual pamphlets to inform the (possibly illiterate) population about the device and its use.
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| − | </p>
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| − | Even taking measures, some responsibility will always be transferred. In the case of a catastrophe resulting from the misuse of the device, there will be a trial in which will be determined who has more responsibility in that specific situation. This will depend on factors such as the intentionally of the end-user and the possibilities that the producer had to prevent the catastrophe. However, even if the end-user turns out to be the responsible one, the producer will also be affected negatively because the product will be perceived as unsafe and the catastrophe will bring bad press to the company. Therefore, even when considering the transfer of responsibility, it is in the producer best interest to make everything in his hand to prevent a misuse of the technology.
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| − | <h4 class="panel-title">
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| − | <div class="col-xs-11">Patient Autonomy: What information should the patient receive? Should the diagnostic be imposed?</div><div class="col-xs-1"><i class="fa fa-arrow-down" aria-hidden="true"></i></div>
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| − | Patient autonomy related to diagnostics is just one part of medical ethics. Medical ethics is a broad field that is based in four pillars: beneficence, no-maleficence, justice and autonomy. Concerning our device, the three first are quite easy to analyze. It complies with the beneficence principle because it provides a mean to detect diseases in an early stage and the possibility to provide treatment, as well as helping to control the spread of infectious diseases. It complies with the no-maleficence principle because the technology itself does not pose any danger to the patient (this does not consider the unethical use by the user). It complies with the justice principle because it will be affordable and easy to produce so that all the society will be able to take advantage of the technology, and not only a privileged part of the society. However, the autonomy principle is a bit more difficult to analyze because, How to react in a mortal epidemic, when the control of the disease is necessary? How autonomic is the decision of the patient when their knowledge about the situation and the device is limited?
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| − | When talking about autonomy and technologies there are three categories:
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| − | <p> ●    In the loop systems: The technology makes the decision after the measurement. For example, the pacemakers are in the loop systems where the decision of the device is not affected by a human. </p>
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| − | <p> ●    Out of the loop systems and informed decision making: The technology is used to take measures or to diagnose, but the decision is based on a person, the patient. The patient is informed of the possible options and their consequences and then she or he will make an autonomous decision. For example, the current healthcare system in developed countries. </p>
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| − | <p> ●    Out of the loop and shared decision making: The decision is placed in a human, but that human is not the patient. This happens in accidents where the patient is unconscious or in undeveloped countries where there are not the means necessary to inform correctly to all the patients, and therefore the healthcare authorities will take a decision instead. </p>
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| − | Ideally, all the societies and their healthcare systems will evolve into one that uses informed decision making for most situations, because it is the only one that totally respects the autonomy of the patient.
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| − | </p>
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| − | In order for the patient to be able to take an autonomous decision it is necessary to provide sufficient knowledge about the decision, such as why is the technology needed, what are the possible outcomes and what happens after each outcome. Although providing knowledge is important for autonomy, that does not mean that autonomy depends on knowledge. The patient will always have the right to refuse the technology even when the decision is based on feelings instead of knowledge, such as distrust to the health authorities. Furthermore, the patients have the right to refuse receiving information.
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| − | </p>
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| − | In our specific case there is a complication, because our device is based on genetically modified bacteria. Although in normal conditions it is not necessary to inform about the technology behind the diagnostic, the controversial perception of genetic engineering can change the situation. Although before using the technology this one must be approved by the government of the specific countries, there might be regions where the opposition to GMOs can be strong. In these cases is necessary to inform directly about the nature of the technology behind the device, so that the patient can take a decision based on their moral standards. In case that the patient refuse to accept an alternative should be offered, even if it is slower or more expensive.
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| − | The autonomy of the patient should never be ignored. Even in a mortal epidemic situation, diagnoses should never be imposed, as it is stated in the International Health Regulations. In a mortal infectious diseases outbreak, the advised way to proceed is to offer the diagnostic as a way of avoiding the quarantine. If a patient refuses to be diagnosed, it will be put into quarantine and only when it is proven though any technology that it is not a carrier it will be possible to liberate that patient. The autonomy principles also apply to entire government. As a general rule, only genocides will be matter of public intervention. In case a country refuses to use a technology to control an infectious disease, a limited number of options are available. On one hand, other technologies can be offered, even if they are less effective. On the other hand, economical pressure might be used to make the government accept the technology, although these measures might have a negative effect in the population, introducing economic problems besides the already existing health problems. In conclusion, diagnostics must always be presented as an optional and beneficial tool for the control of diseases, and not as a compulsory tool for screening the population.
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