Over half a million people are experiencing homelessness in the United States1. The homeless are individuals who lack housing– this includes those whose primary residence during the night is a supervised public or private facility, like a shelter, that provides temporary living accommodations. The homeless population also includes individuals who are residents in transitional housing 2. As the homeless population continues to grow in this country, the research being conducted among the homeless is also increasing, fronted by organizations such as the National Organization to End Homelessness and often being funded by government grants. This research is being conducted with the intentions of helping individuals and in hopes of eventually ending homelessness, however at what cost to those experiencing homelessness? While there are existing standards regarding the ethics of human research in general, there are no specific provisions for research that is quite often conducted among the homeless population. The primary set of ethical guidelines is the Belmont Report which essentially strives to uphold important rights when humans are subjects in research. In addition it provides special protection for vulnerable persons such as children and the institutionalized13. But are current research endeavors violating the rights laid out in the Belmont Report, and if so should the homeless be categorized as vulnerable and therefore be entitled to protections specific to the population? The stakeholders in this ethical dilemma are the researchers that would either object or support change and the lawmakers that would eventually be responsible for placing the laws.
The Belmont Report is a set of ethical guidelines for protection of human subjects in research. The Belmont Report embodies three major bioethical principles: respect for persons, beneficence, and justice. Respect for persons is the first major foundation of the Belmont Report, and it is a two-fold principle. The first aspect addresses the absolute value of another person’s autonomy3. The second aspect discusses the special obligation to those with a diminished capacity to make autonomous decisions. Respect for persons entitles all to make decisions as an autonomous being as well as it entitles confidentiality. The second principle is beneficence which refers to the duty to do good by acting with nonmaleficence4. Maleficence would be the action of causing harm, therefore the principle of beneficence strives to protect subjects from any harm, especially harms that would have been foreseeable in human research12. The third principle is justice which means that the risks of the research can never rest unfairly upon any group within the population3. This principle also highlights the special attention that must be given vulnerable populations, specifically noting the children and the institutionalized.
Facts of the Issue
First, it must be noted that the Belmont Report is not a regulatory legislation, it merely tests the integrity of the research. Therefore, while many of the principles of the Belmont Report may be violated during research among the homeless population, this would gain no legal ground because it is simply a set of standards of what should be done not necessarily was has to be done by law3. While the Belmont Report is a well known and highly referred to set of ethical duties, the principles are vague and therefore can be loosely applied to situations. Principle-based ethics are effective in establishing the minimum of behavioral standards to follow, therefore researchers may only act to the bare-minimum of what they feel they should do and still be able to justify it utilizing these principles5. The Belmont Report specifically notes the special attention that must be given children and the institutionalized because these are populations that have been taken advantage of in the past in terms of human research. The homeless are a marginalized population that also deserves special notation in ethical standards as well as they deserve legal protections. Children have legal protection through HHS regulations at 45 CFR part 46, subpart D which permits IRBs to approve only three specific categories of research involving children as subjects2. There are no legal regulations specifically regarding the research that can be approved on homeless individuals, but it is a field of research that is increasing.
The Respect for Persons principle protects not only children and the institutionalized but also states others who are vulnerable are entitled to to special protection against abuse, exploitation, and discrimination on grounds of human dignity, caring, and fairness6. This principle embodies the responsibility to protect those with a limited or compromised autonomy (Belmont Report), so perhaps the homeless should be more specifically included in guidelines such as the Belmont Report as the children and the institutionalized are. Research among the homeless can be seen to breach the autonomy of the homeless because often certain generalizations are made after research is conducted within this group. This is unfair because each individual experiences homelessness very differently7. This research can also be seen as exploitative to the homeless because the generalizations being made about these individuals not only groups their diverse experiences into one, but makes a spectacle of the extreme adversity they are facing. In fact, some of the realities of homeless life include drug and substance use, trading sex for human necessities, increased exposure to weather extremes and to violence, lack of safe reliable shelter, and inability to fulfill basic hygiene needs8. The principle of autonomy specifically protects against exploitation of vulnerable groups, so why are the homeless not included? Another way research on the homeless can be seen as a breach of autonomy is because this principle also embodies confidentiality and so perhaps much of this information should not be disclosed. The process of informed consent must also be acknowledged when protecting the autonomy of these individuals. This is because the homeless may not be fully competent to give their informed consent. 25% of this population suffer from untreated severe mental illness which could have a great impact on participant comprehension as well as disability or drug usage could11. Other inabilities to properly give informed consent could be due to reasons such as age, the lack of understanding of medical terminology, language or cultural differences, not having a way to access to more information.
Beneficence is another element of the Belmont Report which states that the welfare of the participants should be the main goal of the researcher by acting with nonmaleficence. Homelessness is often caused by traumatic experiences such as domestic violence, physical or sexual abuse, or family and relationship breakdown9. Therefore, the impact of interviewing those within this vulnerable population must be taken into account. Does conducting qualitative research by interviews bring back traumatic memories for these individuals? A significant amount of the homeless have PTSD, many being veterans, others experiencing PTSD as a result of the experience of losing shelter and family connections as well as the additional stressors and realities that come from living without shelter10. Talking about certain experiences may trigger PTSD in people which would most likely result in regression of the uphill battle they face with homelessness. This would then violate the bioethical principle of nonmaleficence which involves avoiding the infliction of harm. If research results in triggering PTSD symptoms this may very well be seen as an infliction of harm.
What are the terms and conditions they are being interviewed upon– are they incentive based? If so, is it acceptable to provide incentives, especially financial ones, to these individuals given their socioeconomic status? This would not be supported by the principle of justice because the incentives would most likely be an unfair cohersion to this particular portion of the population. The homeless are economically disadvantaged and therefore could be easily coerced by incentives. Offering an incentive may put these individuals in a tricky situation: do they decide to take the incentive because it would help support themselves and their family even if it forces them to do something they do not wish to do and could potentially be difficult emotionally and mentally.
One of the possible paths is to enact laws that would ensure the rights of the homeless population in research. Consequentialist ethics could be applied in support of making legal guidelines as this weighs the maximum rightness over wrong. In terms of looking at the sum of the consequences and breach of rights that fall upon the homeless population when they are used as subjects in human research, it could be argued that as of right now the wrongness is outweighing the right. However, the opposite path of not enacting laws could also be justified. Research among the homeless could be supported by the theory of Kant when looking at the intent of an action. Continuing to conduct research without specific standards for research among the homeless could potentially be justified since the intent is not to cause the harm but instead is to ultimately help end homelessness by learning more. So is it the responsibility of the government to gather facts and statistics, even if it is a violation of their rights?
Continuing research as so could also potentially be justified by utilitarian theory. The homeless are a group that are at greater risk for adverse-health related outcomes 3, therefore is research necessary to help these individuals? Gaining information that can help homeless individuals from facing adverse health experiences in the future may outweigh the negatives of conducting research on this vulnerable population. Could regulations potentially halt pivotal research in ending homeless. Also, if incentive use among this population were taken away would there be little to no participants? Would that end up hurting this population more because the ability to conduct useful research would decrease?
There are many obvious breaches in rights of homeless individuals when they are subjects in research which conveys the need for specific regulatory legislations as well as it shows how the current standards are failing to provide protection. What legal guidelines should be put in place? To uphold the principle of respect for persons, the homeless should be legally defined and protected as other vulnerable populations are. There should also be certain clearances to ensure the process of the informed consent can be fairly completed by the participants. These clearances would eliminate that any of the potential inhibiting factors would inhibit the ability to give informed consent. To further expand on the principle of beneficence, the procedures of the interviews and data collection must be highly vetted by the IRB to ensure that all potential harms that could come, through the process of interviewing for example, are nonexistent. Any research that could present a risk should not be allowed because this is indeed a vulnerable population. Lastly, in terms of justice there should potentially be legislation prohibiting the use of financial incentives because this is an unfair way to gain participants within this group.
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