Ethics in Research
This article is inspired by conversations held in the UIAF WhatsApp chat on 01-06-2022 and July 14th, 2022, and 31st July 2022
Relativity applies to physics, not ethics
Albert Einstein
Following ethics is a way of life. Ethics is also a personal attribute, which one follows in all walks of life, be in personal, professional, research and institutional. However, we may teach the principles of ethics, and if self-conscience is not attuned, there is a tendency to breach ethics.
But what is ethics and what are its principles? These are a set of rules, written and unwritten, primarily embedded in culture and imbibed through processes of socialization, that govern human behaviour.
In research, ethics refers to the values and norms established by an institution to regulate any scientific activities. It is also a collection of scientific morals in the line of duty, binding on the researcher and the institution. Figure below shows multiple aspects of Ethics, which combines and overlaps with rules of conduct, regulations, values, moral principles, ethical practices and research.
In this article[1] we will give a brief on following ethics in research by providing some well-known and not so well know illustrations that document a discourse on ethics in research.
Some common questions that intrigue every researcher are:
What are the principles of conduct in research?
What is the meaning of ethics in research and how to follow it?
Is ethics a personal attribute or a learned trait?
Who determines them and, in whose judgement, are they be considered correct?
Are there any universal principles of ethics to conduct that are applied in research?
Do ethics change over time, and what happens when the researcher or the professional body conducting the research does not abide by them?
How to write ethically?
Generally, ethics in research means honesty- honesty in reporting the data, results, methods, procedures, and publishing. It also encompasses objectivity, integrity, prudence, ingenuousness, respecting intellectual property, maintaining confidentiality, and publishing responsibly. The question of ethics in the past appeared as a footnote in research methodology curriculum; but now adherence to ethics and ethical conduct in the research practice is integral to its validity.
The term ethics comes from a Greek word, ethos meaning ‘character’ and is increasingly used in research across disciplines. The consideration of the ethical dimension in research requires the researcher to ask how the ethical issues influence one’s research questions, how the ethical issues affect the conduct of one’s study, and what moral responsibility one has towards their research subjects[2]. The word ‘Subject’ is also contested now; instead, research participants, research partners and collaborators and lately co-research participants are employed that are neutral and acceptable across disciplines. The notion of informed consent, i.e., the participant's right to be informed about the nature of the research study, detailing the risks and benefits before the research, is now mandatory.
It also entails the ethical issues/dilemmas the researcher faces while writing or publishing one’s research and whether the research directly benefits those participating in the study. Being ethical is an essential and critical part of the research. It starts with the conceptualization of research questions to data generation, its interpretation and then publication.
History of discourse on ethics is complex and ambivalent. It has not been a smooth journey both in social sciences and biomedical research. Various events led to the development of research protocols that were made mandatory to follow if the research involved living beings.
The infamous Tuskegee syphilis study, conducted by the U.S. Public Health Service in 1932, is an illustration of an unethical research that persisted for decades without being questioned. The study examined the untreated cases of latent syphilis in 400 African American males from Tuskegee, Alabama. The studied subjects were not asked for consent to join the project, and the antibiotic treatment that was known to offer relief was deliberately withheld, leading to the slow progression of the disease and, eventually, early death of the subjects.
This experiment lasted for more than four decades until 1972 when it was exposed, and the government officials were compelled to end the experiment. More than 100 subjects died of advanced syphilis, and later, the study was declared ‘ethically unjustified’. It was argued that penicillin should have been administered to the infected subjects. Moreover, the subjects were unaware that a study was being conducted on them. They had not volunteered for the study; instead, they were deceived into believing that they were given free treatment by the Government doctors.
ANTHROPOLOGICAL MISDEMEANOURS
Some Anthropologists have also erred in their pursuit of knowledge and indulged in unforgiveable unethical acts. One name that is often cited in this context is that of Leopold Franz Eugene Fischer (5th June 1874 to 9th July 1967). From 1927-1942, he was director of the Kaiser Wilhelm Institute for Anthropology, Human heredity, and Eugenics (KWIA) in Berlin. In this position, he facilitated use of his scientific skills to legitimize Nazi racial policy. He endorsed superiority of European races and denied relevance of process of natural selection. His arguments emanated from an ideological belief and professional aspirations and were not based on any scientific reasoning. In violation of ethical conduct, Fischer and his colleagues gave scientific reasoning in the Nazi “genetic Health courts” supporting forced sterilization on racial grounds, particularly those born to German women and French-African soldiers in World War I. He resourced human research material from victims of Nazi brutality, killed in concentration camps and penal institutions. He also defended Nazi racial policy in International scientific meetings. He retired from KWIA in 1942 and appointed his student and colleague Otmar Von Verschuer. It was under Verschuer and his student Josef Mengele that most inhuman experiments were conducted in the name of science. They were responsible for infecting twins with virulent disease organisms, removing their body parts for ascertaining phenotypic similarities and differences to cite just a few examples of malicious unethical research.
ETHICAL CODES
The above-mentioned events shocked humanity and scientific community. These were most inhumane experiments on the prisoners in the Nazi death camps during World War II. The gory experiences and merciless acts formed the basis for evolving ethical codes and principles. The Nuremberg code was drafted in 1947 as a set of standards for judging physicians and scientists who had conducted biomedical experiments in concentration camps. The code formally talked about the rights of the research participants and stipulated that all research participation must be voluntary. The Nuremberg codes (1949) evolved principles such as informed consent, absence of coercion, properly formulating scientific experimentation and beneficence toward experiment ‘subjects’.
Other codes of ethics soon followed, Helsinki Declaration of 1964, which mandates that all biomedical research projects involving human participants should carefully assess the risks of participation against the benefits, respect their privacy, and minimize the costs of participation. The Council for International Organization of Medical Sciences (CIOMS) was created for those researching in developing nations. The Belmont Report, written by the National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research, USA, identified the basic ethical principles that should underlie the conduct of biomedical and behavioural research involving human beings. So, any research involving human participants must follow the ethical guidelines. Any discrimination of the research participants based on gender, age, caste, or ethnicity is not acceptable. Moreover, vulnerable populations like children, aged, handicapped or physically challenged should be researched with the utmost sensitivity and their rights should never be violated.
This was the worst form of Eugenics, during the holocaust that arose from the abuse of political power to harm humankind using science as an instrumentality. Outrage and shock these experiments generated pushed for the formulation of ethical codes for human research. It brought individual to the forefront recognising one’s right to say no to any kind of live experimentation. It gave them the option to withdraw from any research study at any time. Ethics is an evolving subject, but decidedly there is no place for coercion and power in it. Ethical research must follow normative value of equality. Hierarchies segregating researcher from the researched have no place in ethical research. It is the responsibility of the institution as also that of individual researcher to ensure safety of the people agreeing to be part of any research study. Only ethical research has the potential to keep humanity safe from any impending disaster. Several procedural checks have been placed by various institutions by setting up ethical committees. Even publications now demand certificates of ethical clearance before accepting any research, particularly those involving vulnerable populations. International or national collaborative research requires ethical clearance from the national committees. But the most important responsibility is that of the individual researcher and his ability to remain neutral while reporting research findings. The decentralization of power is critical to the process of evolving standards of ethics.
In this context Economic and Social Science Research Council (ESRC) UK gave a set of conducts for research on human participants:
Research should aim to maximise benefit for individuals and society and minimise risk and harm
The rights and dignity of individuals and groups should be respected
Wherever possible, participation should be voluntary and appropriately informed
Research should be conducted with integrity and transparency
Lines of responsibility and accountability should be clearly defined
Independence of research should be maintained and where conflicts of interest cannot be avoided, they should be made explicit.
Organisations and researchers should ensure the confidentiality and security of personal data relating to human participants in research; and human material involved in research projects.
Organisations and researchers should make sure that any research involving human participants, human material or personal data complies with all legal and ethical requirements and other applicable guidelines.
Appropriate care should be taken when research projects involve vulnerable groups, such as the very old, children or those with mental illness; and covert studies or other forms of research which do not involve full disclosure to participants.
The dignity, rights, safety, and wellbeing of participants must be the primary consideration in any research study. Research should be initiated and continued only if the anticipated benefits justify the risks involved.
Researchers should inform research participants that data gathered during the course of research may be disseminated not only in a report but also in different forms for academic or other subsequent publications and meetings, albeit not in an identifiable form, unless previously agreed to, and subject to limitations imposed by legislation or any applicable bodies, ethical, regulatory or otherwise (UKRIO)
Ethics not only pertains to the conduct of research; it also must be followed in writing. There are examples in history where the works of some scholars are not recognized, and the credit goes to someone else. An example is Scottish physician Henry Faulds who investigated fingerprints.
Faulds worked as a medical missionary in Darjeeling and Japan. He did some path-breaking work in identifying fingerprints. On seeing fingerprints on the ancient pots, he realized that everyone has unique fingerprints. He and his medical students shaved off their finger’s ridges with razors until no pattern could be traced. But each time, the ridges grew back in the same pattern confirming it to be a unique identification of an individual. They also noticed that in scarlet fever, which results in peeling of the skin, the fingerprint pattern did not change. Faulds decided to promote the idea of fingerprints and approached Charles Darwin in 1850. Darwin declined this work but passed it on to his relative Francis Galton. In 1880, Faulds's first paper on the subject titled "On the Skin-Furrow of the Hands" was published in Nature. In 1892, Francis Galton published a book on the use of fingerprints with no mention made of Faulds' contribution. In 1901, Edward Henry, a former colleague of Galton and Commissioner of Police at Scotland Yard, set up the Fingerprints Bureau. It is to these three men - Galton, Herschel and Henry - that credit is frequently given for discovering the use of fingerprints in criminology, but the contribution of Henry Faulds is often not mentioned. It is essential to follow the principle of ethics in writing and publishing and give due credit to other scholars' ideas, theories, and concepts.
However, over the years, concerns raised over ethical issues have given voice to those who have been victims of uninformed research. One such study was conducted on the American Indians in Arizona, where consent was taken for a study on their blood sample. Few years later, another study was undertaken on the stored samples and the results published without taking consent from the research participants. When the new study and its results came to the fore, the natives challenged the University for its unethical conduct of publishing the second study. The university had to compensate research participants. What is troubling in such instances is that irrespective of strong ethical codes in place, its violations continue to happen. This is denial of fundamental human rights to privacy and voluntary participation in any research. If such violations happen in democracies, one wonders what may be happening in the name of science in closed societies!!
ETHICAL CODE FOR RESEARCH PRESCRIBED BY ICMR
In India, Indian Council of Medical Research (ICMR) is leading in developing the ethical guidelines for research. The guidelines can be accessed on the link
https://ethics.ncdirindia.org//asset/pdf/ICMR_PRIPE2019.pdf
Keeping pace with the changes in the biomedical research, the guidelines are regularly refined thereby providing adequate protection to the participants. The ethical principles in research have now become one of the cornerstones of modern social research and research ethics has become an essential aspect of any study. There are review boards to oversee the goals of the research project and monitor research process to ensure ethical conduct. Most reputed publication editorial boards insist on ethical clearance before accepting any research study for publication. The Institutional Review Boards (IRBs) now watch over all the research proposals that involve working with human participants and animals. The board ensures that the consent procedures have been carried out carefully, and no group of individuals is unfairly treated or is left out of the potential outcomes of a given study.
Currently, professional associations for each discipline exist that outline the general ethical guidelines relevant to the disciplines. The last decade has seen more concern with the ethical issues in social science research and biomedical research. The guidelines now cover public health research, and social and behavioural science research and ensure a strict code of conduct focusing on specialized areas like informed consent, biological materials, biobanking datasets and vulnerability. However, these committees are more inclined towards medical research, and we need to evolve ethical codes for social science research, especially when UGC has mandated it.
CONTRIBUTED BY
Sunita Reddy (Associate Professor), Centre of Social Medicine and Community Health, School of Social Sciences, Jawaharlal Nehru University, Adjunct Faculty, Special Centre for Disaster Research, New Delhi-110067. Email-sunitareddyjnu@gmail.com
Gunjan Arora (Post Doc Fellow), Centre of Social Medicine and Community Health , School of Social Sciences, Jawaharlal Nehru University, New Delhi. Email- gunjan_edu@yahoo.co.in
Edited By:
Shalina Mehta, Professor of Social and Cultural Anthropology (retd.)
[1] This article is inspired by conversations held in the UIAF WhatsApp chat on 01-06-2022 and July 14th, 2022, and 31st July 2022. Concerns on ethical practises in research were initially raised by Prof. P. C. Joshi. Several members participated in these conversations citing various instances in science research where unethical practises have persisted before the enactment of ethical code of conduct as also after these guidelines came in practise. Some important points were put forth by Prof. Mutatakar, Dr Nita Mawar, Prof. Ranjan Sahoo.
[2] The term Subjects was initially used for the participants who participate in the research. But currently the term is no longer in use; instead, research participants and collaborators and more recently co-research participants are used. This change signifies the acceptance of the participants' rights and nullifies the power difference between the researcher and the researched.
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