Consequences and Conscience: The Ethical Pitfalls of Using Consequentialism to Justify Unethical Experimentation

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This paper will ultimately focus on the ethical pitfalls of using various derivatives

of consequentialism to justify unethical conduct in the form of experiments on institutionalized populations. The question of whether it is ethical to justify the suffering of a group of people in pursuit of a possible scientific breakthrough has haunted our ever-growing society all throughout history. To explore this question, this paper will include the main arguments for both sides -- it is ethical vs. it isn't ethical -- when evaluating whether putting an institutionalized group at risk is justified when seeking scientific advancement. These arguments will be followed by discussions of the roots and core principles of utilitarianism and different derivatives of consequentialism, and their presence and implications in current and historical Human Challenge Trials. While this paper will discuss how the results of these scientific experiments benefited society, the scientific backgrounds and implications of these experiments will not be explained in great detail and only addressed when relevant to the ethical examination. Also, while there are institutionalized people who have the capacity to make informed decisions, the paper will focus on those who are unable to. 

Table of Contents

• Abstract

• Background Information

• Connecting Past and Present HCTs

• A Matter of Consequences and Conscience

  • Legislation and Standards Over Time

  • Empathy and Sacrifice

  • Consequentialism

  • Autonomy and Informed Consent 

• Conclusion

Abstract

Modern medicine is a blessing and a curse; because of it, the average human lifespan has increased significantly and the overall quality of life has improved. However, from a modern lens, previous scientific breakthroughs were achieved through questionable means. For example, in an attempt to deduce the origin of and cure for stuttering, orphans at the Sailor Orphan’s Home were left traumatized and unable to speak. This type of experimentation wasn’t uncommon; all throughout history, the safety of groups of people being compromised for the sake of scientific progress has been normalized. In fact, this same chain of events is being repeated in the present with the Covid-19 vaccine distribution and experimentation. While there are significant differences between past and present human challenge trials, the same variations of consequentialist reasonings are used to justify unethical conduct in all of them. 

While it is true that utilitarianism and different derivatives of consequentialism are valid arguments and present in all aspects of medical research, the problem lies within the fact that people are taking a permissive view on instrumental harm. Here, instrumental harm refers to the  harm that is necessary to achieve the purpose of the experiment. An example of instrumental harm would be administering a shot to an experimental subject to test the usefulness of a medication. 

Because doing research on people who could or did not meaningfully consent to participate is unethical, excusing or overlooking ethical deficiencies in past clinical research because it produced presently-useful results is unjust. It also suggests a slippery slope: if we justify unethical conduct when we know the research results are useful, will we take the next step? Will we overlook present-day or ongoing ethical deficiencies in clinical research if the research might produce useful results? Should the possibility of a positive outcome ever justify present-day unethical research conduct?  

Background Information

Before moving on to examine case studies, some background information needs to be established. The Civil Rights of Institutionalized Persons Act of 1980, 42 U.S.C. § 1997, defines an institution as: 

“any facility or institution -- which is owned, operated, or managed by, or provides services on behalf of the and State; and which is -- for persons who are mentally ill, disabled, or retarded, or chronically ill or handicapped. It can also be a jail, prison, or other correctional facility, a pretrial detention facility for juveniles (awaiting or post trial), a facility for purposes of receiving care of treatment, or any state run facility that does not only provide elementary/secondary education to juveniles who require supervision after being deemed a delinquent, neglected, chronically ill or handicapped.”  (The Civil Rights of Institutionalized Persons Act of 1980, 42 U.S.C. § 1997)

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The term “institutionalized’, according to the Cambridge Dictionary, includes people such as patients or prisoners “[who] have become institutionalized, [who] gradually become less able to think and act independently, because of having lived for a long time under the rules of an institution” 

After living in an institution for a very long time, institutionalized persons may lose their capacity to make informed decisions and to function independently outside of an institutionalized environment. This process, called the “Mortification of Self,” will be discussed in detail further in the paper. While there are institutionalized people who have the capacity to make informed decisions, this paper will focus on the institutionalized people, such as orphans, who lack the capacity. 

Finally, according to the World Health Organization (WHO), human challenge trials (HCTs) are 

“trials in which participants are intentionally challenged (whether or not they have been vaccinated) with an infectious disease organism. This challenge organism may be close to wild-type and pathogenic, adapted and/or attenuated from wild-type with less or no pathogenicity, or genetically modified in some manner.”

Connecting Past and Present Human Challenge Trials

Conducted by Mary Tudor under the supervision of Wendell Johnson, the Monster Study was a stuttering experiment performed on 22 orphaned children at the Sailor Orphan’s Home in Davenport, Iowa from January 1939 to May of the same year. 

Dr. Wendell Johnson was a speech pathologist and stutterer since childhood who said that “I became a speech pathologist because I needed one.” Growing up, he went through many speech therapies but none of them worked. He was also constantly bullied for not being able to talk without stuttering. As an adult, he was impelled to study at the University of Iowa, the most famous center for stuttering research in the world. There, Johnson and other stuttering scientists used each other as human guinea pigs:  

“They'd draw blood, hook themselves to electrodes, strike their knees to test reflexes, whip out notebooks in midstride and transcribe their own and others' faltering speech. He experimented on himself and worked with other stuttering scientists, but was unsuccessful.” (Reynolds 2003)

At the time that Johnson was an assistant professor, the leading researchers at the University of Iowa concluded that the neural responses of people who stuttered differed slightly from those who did not. However, Johnson’s case was different because he wasn’t born a stutterer. Around the age of 5-6, he started stuttering because his teacher had told his parents that he was starting to stutter. Because Johnson became self-conscious of his speech, he developed stuttering. Building on his personal experiences, Johnson hypothesized that stuttering was a learned behavior that could be unlearned. Thus, he set forth to test his hypothesis. 

While there isn’t much information about Mary Tudor, it is known that she was a graduate student recruited by Dr. Johnson to conduct the experiment.

On the other hand, while we don’t have any contemporaneous information about the daily routine of the children, we do know how the experiment was conducted. 

Speaking by businessicons13 from NounProject.com

In January of 1939, Tudor and 5 other graduate students listened to 22 random children speak and graded them on a scale from 1 - 5 (poor to fluent). Out of the 22, 10 were deemed stutterers and split equally into group IA and IB. In group IA, children were told that their speech was fine, while the children in group IB were told that they were beginning to stutter. The remaining 12 non-stutterers were chosen at random and split into two equal groups called IIA and IIB. In group IIA, healthy children were told that their speech was abnormal and that they were beginning to stutter. They were also told that they must correct this behavior. In group IIB, children were treated as normal speakers and given compliments. After the splitting of groups, Tudor would drive to the orphanage and talk to the children for 45 minutes using an agreed upon script. 

The purpose of the experiment was unclear to the caretakers in the orphanage because they were told that the children would receive speech therapy. While Tudor told the stutterers that their speech was fine, it is clear that she was trying to deduce the origin of stuttering by trying to induce it in healthy children as well. 

This experiment is portrayed as a study that was of good intent (Johnson wanted to solve the problem he had long struggled with) that ended with disastrous results by investigators such as Gretchen Reynolds (for the New York Times) and by psychologist Dr. Jeremy Dean. However, it is important to keep in mind that the true intent of Tudor and Johnson is unknown. 

In the end, the results were mixed. The children in group IIA (non-stuttering children who were told that they needed to change) started speaking less, became more conscious of their movements, and some refused to talk at all for a while. Their school grades also fell, as some were very hesitant to speak, as they were focused on correcting themselves. As one of the older children explains: “''It just ruined my life. I can't talk no more.” Mary Tudor felt guilty after seeing how the children were affected, and volunteered to provide follow up care. 

“Three times after her experiment had officially ended she returned to the orphanage to voluntarily provide follow-up care. She told the IIA children that they didn't stutter after all. The impact, however well meaning, was questionable. she wrote to Johnson about the orphans in a slightly defensive letter dated April 22, 1940, ''I believe that in time they . . . will recover, but we certainly made a definite impression on them.'” (Reynolds 2003)

62 years later in 2001, the results of the Monster Study were revealed by The San Jose Mercury News. Consequently, three surviving orphans each sued the state of Iowa and the university for 13.9 million dollars on the account of emotional distress and fraudulent misrepresentation. The state of Iowa ended up paying 925,000 dollars to settle the case. Another important fact to consider is that the results of the experiment are still being questioned for their validity, since it was found that all the children who were labeled stutterers were wrongly diagnosed. 

On the more positive side, the Diagnostic Theory was deduced. Due to this theory, many started working directly with children to help with speech impediments instead of criticizing them. The Diagnostic Theory states that: 

“The problem of stuttering arises when a listener, usually a parent, evaluates or classifies or diagnoses the child's developmental hesitations, repetitions, and prolongations as stuttering, and reacts to them as a consequence with concern and disapproval. As the child senses this concern and disapproval he reacts by speaking more hesitantly and with concern of his own, and finally, with the tensions and struggle involved in efforts to keep from hesitating or repeating.” 

Today, it has been found that there is a biological component to stuttering rather than just an environmental one. However, it is believed that Johnson’s theory was the underpinning of most childhood speech intervention in America, as many started working with children to improve their speech instead of criticizing them.

Image by PIRO4D from Pixabay

Currently, while there are laws regarding unethical conduct in experimental studies, there are many parallels that can be drawn between past and present human challenge trials. 

More recently, there is the controversy over the distribution of the Covid-19 Vaccine in the UK. In the United Kingdom, officials have decided to focus on distributing the first dose of the vaccine to as many people as possible rather than distributing both doses group by group. Because the focus of distribution has shifted, the second dose will be postponed. While there is not much data about the effects of postponing the second dose of the vaccine, speeding up the distribution and postponing it is a risky move for those of old age and/or with underlying conditions. It is also known that the second dose has left people with worse side effects when compared to the first dose. 

Here, the controversy of this case lies in sacrificing quality for quantity and in conducting human challenge trials with little information. 

“..they are also effectively turning that country into a living laboratory. The moves are based on small slices of evidence mined from “subsets of subsets” of participants in clinical trials, as one expert described it for STAT, and on general principles of vaccinology rather than on actual research into the specific vaccines being used. If the efforts succeed, the world will have learned a great deal. If they fail, the world will also have gained important information, though some fear it could come at a high cost.” (Branswell 2020)

With this decision, the government is potentially undoing all the work that has been done to reach herd immunity and might be giving the virus more time to learn about our immune systems with the time between doses. By giving the virus more time, we also might be allowing it to become stronger by evolving; this evolved virus could spread to other parts of the world.

“My concern, as a virologist, is that if you wanted to make a vaccine-resistant strain, what you would do is to build a cohort of partially immunized individuals in the teeth of a highly prevalent viral infection.” (Bieniasz 2020)

However, if it is found that distributing the first dose of the Covid-19 vaccine to as many people as possible is speeding up the path to herd immunity, the risk of postponing the second dose would be justified by the positive outcome. 

Similar to the children in the Monster Studies, we are all experimental guinea pigs. Just like the children who didn't know anything except that they were to receive speech therapy, we only know that the vaccine is supposed to benefit the greater good. Also, when it comes to the issue of consent, we don’t have much meaningful choice, as we only have two bad options to choose from: going to work and sacrificing our safety, or being unable to go to work. While there are more fortunate people who can work from home, some essential workers are required to take the vaccine in order to keep working (just like the children, who were only part of the experiment because their caretakers consented their participation).

There is also social pressure when it comes to getting the vaccine, as people are inclined to think impartially about the greater good rather than their individual opinion. Also, ads with the purpose of convincing people to take the vaccine are all over social media and spread by respected celebrities and officials. For example, the slogan “Get Back to What You Love” continues to appear on billboards, free food is being offered to people who show their vaccination card at checkout, and other prizes such as free entry into a 1 million dollar lottery are being presented to people who are still wary about the vaccine. Instead of trying to convince people that taking the vaccine will help protect themselves against the virus, items that may worsen their health and have little correlation to taking the vaccine are being provided as incentive. The only coercive item being used that has a connection to health is the lottery, as 1 million dollars can help people pay their medical bills and get back on their feet. 

As can be seen, there are several parallels that can be drawn between the Monster Studies and the Covid-19 vaccine distribution. While we do not know if the risk of speeding up vaccine distribution will be worth it, it is likely that we are on the path to repeating history’s mistakes once again.

A Matter of Consequences and Conscience

Image by Mudassar Iqbal from Pixabay

When evaluating the statement, “it is ethical to conduct unethical experimentation if the results benefit the future,” it is important to consider the value of empathy. According to the value of empathy, we need to put ourselves in the perspective of the past in order to fairly evaluate past HCTs. Specifically, there were no standards pertaining to experimental conduct or informed consent at the time. While there were common laws pertaining to an adult-of-sound mind’s right to choose what happens to their own body and criminal laws that prohibited battery (unauthorized touching of a person by another person), there was no legislation pertaining to the regulation of unethical conduct in experimental settings or the requiring of informed consent until quite recently. 

Legislation and Standards Over Time

In regards to informed consent, as a result of Schloendorff v. Society of New York Hospital(1914), courts in New York have established that performing a procedure on a patient without consent was a form of battery. Mary Schloendorff was forcibly subjected to surgery by her doctor and successfully sued the surgeon. This case was instrumental in the path to eliminating paternalism in medicine. As then Judge Benjamin Cardozo in the Schloendorff case concluded, under the principle of autonomy “every human being of adult years and sound mind shall have the right to determine what shall be done with his own body” (Green and MacKenzie) 

Monster Trials happened in 1939. This case was not affected by the Schloendorff ruling because the orphans were minors and their caretakers had consented to the experimentation. Another infamous study was revealed 7 years later by The Doctors’ Trials at Nuremberg in 1946, where American judges tried the grievous actions of Nazi doctors. The trials resulted in the Nuremberg Code and stated that “The voluntary consent of the human subject is absolutely essential.”

Then, in 1957, the term “informed consent” was first used by American courts in the case Salgo v. Leland Stanford Jr. University Board of Trustees. Here, a doctor had failed to tell a patient named Martin Salgo that having an aortography could result in paralysis. Judge John Jefferson Bray decided that failure to inform a patient of risks and alternatives was unjust and needed legal action. 

This concept of informed consent appeared again in Canterbury v. Spence in 1972. Dr. Spence had neglected to tell his patient that paralyzation was a possible side effect of thoracic spine surgery. Dr. Spencer confirmed in his testimony that paralysis was a known side effect, and the judges of the Canterbury case concluded that: 

“... the physician must seek and secure his patient’s consent before commencing an operation or other course of treatment. It is also clear that the consent, to be efficacious, must be free from imposition upon the patient. It is the settled rule that therapy not authorized by the patient may amount to a tort—a common law battery—by the physician. And it is evident that it is normally impossible to obtain a consent worthy of the name unless the physician first elucidates the options and the perils for the patient’s edification. Respect for the patient’s right of self-determination on particular therapy demands a standard set by law for physicians rather than one which physicians may or may not impose upon themselves.” (Canterbury v. Spence 1972)

As for legislation regarding experimental conduct in the United States, the National Research Act didn’t exist until 1974. In 1974, President Richard Nixon signed it into law, which created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The main purpose of the act was to establish basic ethical principles and guidelines that should be followed when conducting HCTs. Some of the guidelines developed included instructions on how to select human subjects, conduct risk-benefit analysis, and defining informed consent. 

The newly formed National Commission then wrote The Belmont Report in 1979, which was a summary of topics discussed in the National Research Act.  After being published, the report was distributed and made widely available to scientists all over the country. 

Finally, The Civil Rights Act for Institutionalized Persons (CRIPA), which defined what an “institution” is and declared that people who live in state-run institutions do not lose their basic rights, was not signed into law until May 23 of 1980. 

Consequently, as legislation and standards regarding unethical experimental conduct evolved, ethical values and social norms have also changed significantly. Since the present definition of what is ethical and the social norms at the time were very different from what we have today, one suggestion might be that the best way of moral evaluation is to evaluate the ethicality of past case studies from the perspective of the past. From this perspective, unethical conduct is justified because social norms and standards at the time of the Monster Studies did not condemn experimentation on institutionalized populations.

Against that suggestion, however, is the idea that from a legal perspective, it is important to keep in mind that the legislature isn’t the deciding factor in whether or not something is justified; laws don’t automatically make things unethical/ethical. For example, before anti-discrimination laws make discrimination illegal, we still found it unethical to discriminate against someone due to their race, sexuality, disability, etc.  

In addition, while it is true that we must put ourselves in the mindset of the past to evaluate the ethicality of past experiments, we can’t dismiss the perspectives of the people who were harmed by the experiment. As Evan Douthit, the attorney representing the surviving plaintiffs in the Monster Studies, argues: 

''I think that a jury will agree that even if these people's speech wasn't exactly ruined, their lives were.' Kathryn Meacham (a survivor of the Monster Studies) has thought of herself as a freak all her life. She still hates to talk, except to her family and a few people in her church. She's a sad, sad lady.'' (Reynolds 2003)

The value of empathy compels that we think about our actions from the perspectives of impacted individuals, and not just from an abstract evaluation of costs and benefits. That is as true for thinking about experiments in the past as it is for experiments today. The ethicality of the Covid-19 vaccine distribution is often only evaluated from the perspective of the government. The perspective of the government is an important one to consider, but it is also equally important to evaluate the ethicality of the distribution from the perspective of the people. One of a citizen’s duties is to benefit one’s community and or society as a whole.

By being a part of a clinical trial, they are aiding scientific development and helping to improve the health of future generations. On the other hand, citizens are more than a part of society; they have their own families and roles in their communities. Here, people have a responsibility to fulfil their role in their individual lives. Being in a potentially dangerous clinical trial can have wide-reaching consequences. For example, if a single parent is harmed during a trial and deemed unable to work, their children will have to suffer the consequences. Sacrifices are made and risks are taken by those who participate in clinical trials.

Empathy and Sacrifice

It is often argued that progress is made through sacrifices. Specifically, it is said that in order to progress as a society, a group of people must be put at risk for the sake of the greater good. An example of this is how if there were no volunteers for the Covid-19 vaccine trials, the path to herd immunity would be significantly harder. As Kaija Helin and Unni A. Lindstrom explain, 

“The theme of sacrifice is not of interest merely as a carer's ethical outlook, but sacrifice can also be understood as a potential process of transformation health. The concept of sacrifice, understood in a novel way, opens up a deeper dimension in the understanding of suffering and makes caring in 'the patient's world' possible.’” (Lindstrom and Helin 2003)

It is not directly stated if it is a willing sacrifice or any sacrifice that needs to be understood in a novel way, but it can be assumed from the broad language (the writers use the phrases ‘concept of sacrifice’ and ‘theme of sacrifice) that sacrifice, no matter if it was of free will or forced, should be understood in a new way instead of only thinking of it as negative. Helin and Lindstrom also raise the point that transformation is a product of sacrifice. In order for transformation in the medical field, some party needs to be put at risk. For example, without test subjects, the Diagnosogenic Theory would not have been surmised. Sacrifice also allows for room to more deeply understand a patient in their most vulnerable state. In conclusion, because sacrifice in this context is instrumental to achieving the desired outcome, putting people at risk is justified. The main question here is whether or not people will agree to be put at risk for the benefit of the greater good. 

Sacrificial harm can also be viewed as a positive from a focus on intent: if the scientists’ intent was to improve public health, the experiment is ethical. For example, because Wendell Johnson and Mary Tudor wanted to deduce the origin of stuttering and cure it, the Monster Studies were ethical. Here, the children at the orphanage were harmed out of good intent. It also allowed Wendell Johnson and Mary Tudor to understand their test subjects (the children) on a deeper level in order to care for them and other stutters. 

Even so, using intent to evaluate the ethicality of instrumental harm is a slippery slope because we can’t read the minds of others. Therefore, we can never know the true intent of people conducting an experiment. It also can’t be assumed that because someone has experienced an issue, that they have good intentions toward others who have the same issue; nor can it be assumed that because someone hasn’t experienced an issue/disability that they have bad intentions. And finally, what is ‘good’ intent and what is ‘bad’ intent? How do we evaluate someone’s intentions as merely good/bad when everyone’s sense of good/bad is subjective? As can be seen, examining the ethicality of sacrifice for the greater good based purely on intent can be problematic. 

Consequentialism

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Another way to understand the concept of sacrifice in a positive light is using Consequentialism, as the positive consequences (transformation and a deeper understanding) justify the means (sacrifice or a group of people). For example, because of the Monster Studies, childhood speech intervention started to be implemented. Therefore, the experiment and the possibly unethical aspects of it are ethical because the positive consequence was achieved.

 However, Consequentialism when used as justification in this context is problematic because no one can predict the future. Therefore, there is no way of telling whether the consequence will be negative or positive. Because the future remains unknown, using it to justify current atrocities isn’t logical or ethical. If people continue to use the uncertain future as justification, ethical reasoning and the much needed consideration of the various stakeholders in a situation will be overlooked. Hence, it is important to view every case study as different and not jump to conclusions based on past conclusions and theories. Continuing to use Consequentialism and Utilitarianism to justify unethical conduct will lead to carelessness. As the Nuremberg Code delineates: 

“The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury…..The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature." (Nuremburg Code 1947)

Another issue with the statement, “it is ethical to experiment unethically if the information gained from the experiment will benefit the future,” is that the use of Utilitarianism (a derivative of Consequentialism) in this context dismisses its core principles. 

Here, using utilitarianism to justify unethical conduct ignores the altruistic core of utilitarianism, which focuses on impartial concern for the greater population rather than taking a permissive view on the harming of individuals for the sake of the greater population. A way to understand this important distinction is the Oxford Utilitarianism Scale, which states that 

“the Oxford Utilitarianism Scale—to dissociate individual differences in the ‘negative’ (permissive attitude toward instrumental harm) and ‘positive’ (impartial concern for the greater good) dimensions of utilitarian thinking as manifested in the general population. We show that these are two independent dimensions of proto-utilitarian tendencies in the lay population, each exhibiting a distinct psychological profile.” (Kahane, Everett, Earp, Caviola, Faber, Crockett, Savulescu)

According to the Oxford Utilitarianism Scale, there are two types of Utilitarianism: positive and negative. The scale is used to differentiate between two versions of Utilitarianism (positive and negative). These two versions are frequently grouped together, but this is incorrect since each have very distinct characteristics and are based on fundamentally different arguments. 

“Acknowledging this dissociation between the instrumental harm and impartial beneficence components of utilitarian thinking in ordinary people can clarify existing debates about the nature of moral psychology and its relation to moral philosophy as well as generate fruitful avenues for further research.” (Kahane, Everett, Earp, Caviola, Faber, Crockett, Savulescu)

The main difference between the two is that that one sees the greater good as a whole, while the other focuses on using one group to benefit more people in numbers. For example, Positive Utilitarianism focuses on “Empathic concern, identification with the whole of humanity, and concern for future generations [that are] positively associated with impartial beneficence” while Negative Utilitarianism is “negatively associated with instrumental harm; impartial beneficence”. 

That said, if we continue to use a possible positive outcome as justification for current unethical conduct, the creation of victims and the administration of harm will be normalized since the unethicality of an experiment will be overlooked on the behalf of a better future. The main issue here is that taking a permissive view on risk and unnecessary harm for the sake of an unknown future is unethical. Unjustified/unnecessary harm’ in this case refers to any psychological or physical pain that wasn’t needed in order to achieve the goal of the experiment. An example of necessary harm would be that in order to see if a medication is safe for humans, it needs to be tested on a human. Another example of unnecessary harm would be trying to deduce stuttering into healthy children when the objective of the experiment was to try and fix stuttering. 

 The implementation of needless harm can also negatively affect the scientific community(especially the scientists who did the experiment) and cause the general public to lose trust in science:

“In addition to falsification, fabrication, and plagiarism, other ethical transgressions directly associated with research can cause serious harm to individuals and institutions.” (The National Academies Press, On Being a Scientist: Responsible Conduct in Research, Second Edition) 

Autonomy and Informed Consent

With the concept of sacrifice also comes the issue of informed consent and autonomy, as sacrifice needs to be viewed as a violation of autonomy if the party being experimented on did not or is unable to give consent. Viewing sacrifice as merely a step on the path to progress is unfair to the people who are being harmed and put at risk. However, if the experimental subjects were thoroughly informed and agreed to participate in the experiment, the experiment is ethical. 

Moving on to the value of autonomy, instrumental harm in this context is unethical because the party being experimented on has a lack of it. Specifically, in the context of the orphans at the Sailor Orphan’s home, the individuals being experimented on are minors and do not have the capacity to make informed decisions. In many cases, orphaned children are much more likely to develop mental health issues while staying at the institution. For example, a mental health study done on orphaned children and adolescents in Tanzania found that: 

“In our study, 49 (16.78%) out of 292 children and adolescents were found to be having behavioral and emotional problems. Factors such as age, sex, reason for being in the institute, age of admission, and years of stay in the home were all seen to be significantly associated (P < 0.05) with emotional and behavioral problems. Conduct problems (34.90%) were found to be most prevalent followed by peer problems (15.80%), emotional problems (14.70%), hyperactivity (8.60%), and low prosocial behavior (3.40%).” (Kaur, Vinnacota, Panigrahi, Manasa) 

As can be seen, a significant percentage of the orphans in the study developed mental health issues due to the time they have been institutionalized, emotional trauma, and the lack of access to mental health professionals. Due to these issues, they lack the capacity to make informed decisions. Another reason as to why an orphan is unable to make an informed decision is because he or she may go through a “Mortification of Self”. 

“This ‘mortification of self’ involved a process whereby the individual was stripped of their past roles to take on a purely institutional role.” (Winnie S. Chow and Stephan Priebe, BMC Psychiatry) 

As described by Winnie S. Chow and Stephan Priebe, BMC Psychiatry, during this process, a person’s sense of individuality is taken away in order for them to take on a purely institutional role. Just because some institutionalized people lack the capacity to judge and make decisions, doesn’t mean that it is permissible to violate their rights. The value of justice applies here, as it is unfair to take advantage of an institutionalized person’s lack of autonomy for the sake of an uncertain positive future. Institutionalized people should be treated the same as way as a non institutionalized person would, because: 

“The principle of justice states that there should be an element of fairness in all medical decisions: fairness in decisions that burden and benefit, as well as equal distribution of scarce resources and new treatments, and for medical practitioners to uphold applicable laws and legislation when making choices.” (Saint Joseph’s University)

Also, according to CRIPPA, people do not lose their basic rights as a citizen of the United States by living in an institutionalized environment. 

“As defined in section 1997 of this title, to egregious or flagrant conditions which deprive such persons of any rights, privileges, or immunities secured or protected by the Constitution of laws of the United States causing such persons to suffer grievous harm, and that such deprivation is pursuant to pattern or practice of resistance to full enjoyment of such rights, privileges, or immunities, the Attorney General, for or in the name of the United States, may institute a civil action in any appropriate United States district court against such part for such equitable relief as may be appropriate to insure the minimum corrective measures necessary to insure the full enjoyment of such rights, privileges, or immunities.” (Civil Rights for Institutionalized Person's Act 1980)

This mortification of self is also present in society today: even if we are not forced to participate in the Covid-19 vaccine trials, we are in many ways coerced to get vaccinated. Coercion here can take on the form of social pressure, financial gain, media influence, and the desire to better society. Because it is impossible to ignore the influence of coercion, it is hard for people to make an independent decision. Also, if a citizen chooses not to take the vaccine for personal reasons, others will think of that person as selfish. Another form of social pressure is how fully vaccinated individuals are now allowed to convene indoors without a mask: if the majority of individuals in a room are not wearing masks, the ones wearing masks will feel isolated by their peers. However, if a citizen does choose to take the vaccine, they are putting themselves at risk because there is a limited amount of research about the virus. Just like the orphans who lost their sense of individuality, our sense of autonomy is being overshadowed by our identity as a citizen in society. 

Conclusion

In essence, taking a permissive view on instrumental harm for the sake of a potentially positive future is unethical because it undermines the risk that the party being experimented on is subject to. Because there is no certain benefit when implementing instrumental harm in an experimental setting, the risk is not worth it. It is also unethical because using a known negative consequence (such as harming a group of individuals) for an uncertain outcome is illogical. 

While research practices in experiments involving human subjects have evolved positively since the Monster Studies, it is still important to view modern scientific studies involving human subjects with a critical eye. If we continue to use this mindset: “X has negative consequences, but the consequences are justified because it could benefit the future,” we are in danger of repeating history/our past mistakes once again. As much as we would like to think that we are pessimistic, we are all innately optimistic. While growing up in unfortunate circumstances might cause someone to be pessimistic, it is human nature to hope for a silver lining. On the path to find that silver lining, people often overlook the damage being done. This hope for a better future is often the driving force behind unethically conducted experiments. 

In regard to past Human Challenge Trials, I am not suggesting here that it is always unethical to use any of the products that were derived from unethical experimentation. The past cannot be changed and refusing to use unethically derived products will not do any noticeable good. However, this does not mean that the unethical conduct in the experiments is justified. The consequences did not justify the means, because at the time the future consequences were unknown. The only reason unethically derived products should be used is because refusing to use them will not change the past. However, it can also be argued that refusing to use products derived from unethical experiments can serve as an incentive for scientists to experiment ethically. Because people in the field of science are interested in the profit that a new product will bring, it will cause them to be more cautious when conducting their experiment if running an experiment unethically will deprive them of their profit. Profit here can mean money, fame, pride, and redemption for the amount of effort that was put into the experiment. 

That said, “human guinea pig culture” is based upon people participating in unethical conduct to achieve a favorable outcome for the greater good. Even so, if people stopped using unethical measures, it doesn’t mean that “human guinea pig culture” will cease to exist; the possibility of a favorable outcome might continually be used as justification of the harm being caused. 

Another important suggestion to consider is that unethical experimentation is inevitable because some might think that all human experimentations are unethical. In my view, it is a matter of how the research is conducted and how the participants are informed/treated, rather than whether or not it is categorically unethical (because it can always be argued that human experimentation is unethical even if it is consented). In the end, progress is really made with sacrifices of people, morals and time. 

Because we can’t avoid human experimentation and “human guinea pig culture”, it is important that we are mindful of what we are consuming. We should honor the accomplishments of the people who came before us who worked to improve the quality of life and health of future generations, but we should also be aware of their faults and possibly unethical aspects of their work. 

"At the end of the day, how does that affect the historical standing of people who did these things? I think we should not cover it up. I think we should be honest and forthright about the mistakes of our pioneers. Whenever they're honored, it should be discussed. Does it take down their standing as pioneers? No." (Arthur Caplan)

Works Cited