04 Oct Ethical Conduct of Research
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Introduction
Depending on the context of the study, researchers often encounter ethical dilemmas that are associated with respect for privacy, establishment of honest and open interactions, and avoidance of misrepresentation. From an ethical standpoint, such challenging circumstances may surface if researchers are grappling with conflicting issues and have to choose between different methodological approaches in complex circumstances. In such circumstances, disagreements among different components including participants, researchers, researchers’ disciplines, the financing organization, and the society might be inevitable. Therefore, there are numerous ethical concerns that should be taken into account when undertaking studies that deal with human subjects. Understanding ethical principles can guide researchers to conduct studies that safeguard the wellbeing of human subjects.
Overview of the Research
In a research work titled Resilience of People Living with HIV/AIDS in Indonesia: a Phenomenological Study, Kumboyono et al. (2018) observe that HIV/ AIDS is among the most prevalent and expanding communicable diseases on the planet. The number of individuals who are diagnosed with HIV/AIDS continues to skyrocket every year in Indonesia and other parts of the world. According to Kumboyono et al. (2018), individuals who suffer from HIV/AIDS often plunge themselves into a series of crises, which indicate the challenges of living with the chronic pathological condition. As such, resilience is one distinct phenomenon that is common among persons living with the diseases Indonesia, a pattern that indicates the results of current health management and expectations of HIV/AIDS patients for better and improved health outcomes. In light of this concern, Kumboyono et al. (2018) undertook a study that sought to examine the mechanism of resilience in Indonesian people living with HIV/AIDS and the factors that influence their specific mechanisms.
Using qualitative phenomenological design, the researchers sampled a total of 27 people living with HIV/AIDS from a primary health care institution in Malang City, East Java, Indonesia. The participants were selected from different socioeconomic, gender, and sexual orientations. The researchers informed participants about the conduct and processes involved in the study, resulting in their consent to participate in the interview process. The findings of the study indicated that the diagnosis of HIV/AIDS reflects the onset of psychological and social distress. Moreover, Kumbomoyo et al. (2018) found that the spiritual response that follows diagnosis is a state that is characterized by crises. As a consequence, the coping strategies and understanding of life by HIV patients is a definite sign on resilience. Based on these findings, Kumbomoyo et al. (2018) infer that HIV/AIDS is a chronic infection that has the potential to induce the unique mechanism of resilience within the Indonesian social system. Therefore, future health and management of persons living with HIV/ AIDS will be needed to enhance and encourage this strategy to guide persons living with HIV into a more comfortable and healthy way of life.
Ethical Issues in Research
The relationships and interactions established between the researcher and participants in a study can potentially generate a wide range of varying ethical issues. While ethical codes, policies and principles are highly significant and beneficial, like any set of norms, they do not cater for all situations. Thus, they often have a high potentiality of conflicting. Nonetheless, the vast majority of decisions often entail the straightforward application of ethical codes and practices. Ethics is one of the most important issues that are commonly mentioned by educators in the scientific community. Ethical misconducts most commonly stem from environmental and individual causes. For instance, when people who are morally weak or unaware of the rules participate in research, ethical violations are bound to occur. Thus, many significant forms of the ethical deviations that are observed in many scientific studies are attributed to the fact that some researchers are oblivious of the ethical norms of scientific research.
Protection of Human Rights
The most important ethical principles in research focus on protecting human rights when dealing with human subjects. Principles of protection of human rights during research emerged out of a dark history that was littered with accounts of abuses undertaken in the name of medical research. One of the most dreadful of these atrocities were undertaken by the Nazi physicians who utilized convicts for human experimentation (Avasthi et al. 2013). The unearthing of these experiments sent ripples of shock across the world, a situation that resulted in the development of the Nuremberg Code to deter recurrence of similar episodes. The Nuremberg Code was the first international code of ethics in clinical research that laid down the guidelines for research dealing with human subjects. This policy made laid down principles, guidelines and standards to be followed by researchers and make voluntary consent essential, allowed subjects withdraw from the experimentation at any time, banned experiments that could lead to major injuries or fatalities of the subjects, and made it mandatory to have preclinical data prior to the experimentation of humans. However, the Nuremberg Code failed to end unethical practices conducted by certain researchers (Avasthi et al. 2013). As a consequence, a collection of guidelines was developed by the 18th World Medical Association General Assembly, also referred to as the Declaration of Helsinki.
The Helsinki Declaration had a collection of principles, which emphasize on informed consent, confidentiality of data, vulnerable populations, and requirements of a protocol, including the scientific justifications for the study. All researches had to be reviewed based on these standards by the ethics committee for a research to be declared as ethically fit (Avasthi et al. 2013). However, it is during the time of the Helsinki Declaration that other major scandals continued such as the Tuskegee Syphilis Experiment in the United States. This malpractice raised concerns in the ethics community, thereby resulting in the establishment of the Belmont Report in 1979. The Belmont Report established the modern regulations and human rights principles associated with research dealing with human subjects in the United States and other parts of the world (Avasthi et al. 2013). Nonetheless, with the growing interest in pharmaceutical, health, and psychological research in the developing and the underdeveloped nations, the Council for International Organization of Medical Sciences, in collaboration with the World Health Organization (WHO) and other health researchers designed the International Ethical Guidelines for Biomedical Research Involving Human Subjects in 1982 (Avasthi et al. 2013). Thereafter, other professional research organizations such as the American Psychological Organization (APA), have designed similar standards that relate to protection of human rights in studies that deal with human subjects.
The Five Human Rights that Must Be Protected
There are five cardinal ethical principles that reflect the five human rights that must be protected during research. These principles include: nonmaleficence, beneficence, respect for autonomy, justice, as well as right to self-determination. The principle of nonmaleficence states that the researcher has an obligation to avoid infliction of harm on human subjects in a study. This principle is closely interlinked with the maxim primum non nocere (‘first do no harm’). The principle of nonmaleficence prohibits killing, causing pain or suffering, incapacitating, and causing an offense on the human subject during research. Therefore, this principle encourages researchers to act in ways that do not cause physical or mental harm on the research participants. More precisely, the principle states that researchers should not cause avoidable or intentional harm. This should incorporate avoidance of any possible risks associated with harm (Jahn, 2013). Researchers should avoid intentional and unintentional violations of this ethical principle. For instance, a researcher does not necessarily intend to harm in order to violate this principle. As a matter of fact, knowingly or unknowingly subjecting a research participant to unnecessary risk amounts to violation of the principle of nonmaleficense.
The principle of nonmaleficense has been applied to this study in many ways. One of the primary focuses of the study was to investigate the coping skills of people living with HIV/AIDS. Thus, when analyzing these coping skills and strategies, the researcher must engage in a one-on-one interview with the participants (Jahn, 2013). In the process, questions that trigger psychological and emotional pain might be asked unknowingly. Such situations are likely to occur in the study, especially when dealing with participants who suffer from HIV/AIDS. In almost all parts of the world, HIV/AIDS patients often witness numerous cases of social stigma. These negative experiences may interfere with the manner in which they respond to interview questions. Therefore, it is the task of the researcher to develop strategies that can help to minimize any possible mental and emotional paint that the persons living with HIV are likely o experience as a result of the data gathering and interview questions. Many studies on nonmaleficense often narrow down to physical harm (Chagani, 2014). However, the concept of harm is broad and dynamic, incorporating all dimensions of human life, including the mental and physical realms. In this particular study, there is no serious physical interaction with the participants that might cause physical pain, harm or death.
The concept of harm is broad and takes many forms. They range from physical and emotional injuries to deprivation of property or violations of human rights. Within the research context, the primary emphasis of harm is often linked to a narrower definition, such as pain, disability, or death (Chagani, 2014). Within these standards, the research has observed avoidance of harm since all the participants who took part in the study did not die, sustain any physical injury or disability stemming from the research. However, harm can be strongly within the eye of the beholder, and a wider definition of harm is often required during ethical considerations. In light of the above, more than one level of harm may come into play in a situation. For instance, the researchers are more likely to inflict mental pain and suffering in the participants by asking questions related to the way in which they responded to the news that they had been diagnosed with HIV/AIDS. However, in such a situation, the researchers have imposed one harm in order to avoid a greater harm. Nonetheless, in all situations, researchers should be prohibited from acting in ways that are likely to generate undue risks or needless harm to participants.
The principle of beneficence is a moral obligation to act for the benefit of others. In this respect, any research work that observes this principle should be designed in a way that is meant to promote societal good and wellbeing (Jahn, 2013). There are various ways in which this principle comes into play. For instance, the principle suggests that researchers should act in a manner that provides benefits to the society, and balances benefits with risks or harms. The principle of beneficence is broad and multifaceted. It includes protecting and defending the rights of others, preventing harm from occurring to others, removing conditions that will cause harm, and supporting persons with disabilities. Furthermore, this principle advocates for rescuing persons in danger during and after research. In furtherance of these ethical standards advocated by beneficence, there are various ways in which the study can be assessed. For instance, the outcomes of the study seeks to improve health professionals’ understanding of HIV/AIDS patients’ coping skills and strategies and the psychological pain that they undergo in the process of coping. As a result, it provides health professionals and psychological researchers with insights into ways of developing interventions that are meant to address mental health problems that affect HIV patients.
The study encourages researchers to design interventions that are meant to enable HIV patients to bounce back to their normal psychological and social norms after receiving adversities as a consequence of HIV/AIDS diagnosis. Indeed, the nature of resilience among individuals who are diagnosed with chronic infections can be grouped into the crisis and survival stages. The former is characterized by the onset of a psychological and physical struggle that follows after diagnosis with several struggles. This study can inform future evidence-based practices that seek to design cognitive and counseling strategies for improving the quality of life of persons living with HIV/ AIDS. As such, the study fulfills the ethical principle of benefiting the participants and the society at large by promoting greater good and wellbeing for persons living with HIV/AIDS.
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