ETHICS IN RESEARCH – Anthropology by K.V RAMESH

INFORMED CONSENT

The issues that were raised in the previous section, emerged, as people were subjected to these unwarranted tests without seeking their consent. In the previous section, you also learnt possibility of researcher having power over the researched. It was this prerogative that was exercised by those who forcibly took samples for experimentation from war prisoners or innocent civilians. Their participation in these experiments were not voluntary. Purpose of these tests was not explained to them nor their consent sought for taking samples. This is gross violation of fundamental human rights. It was because of these concerns that the need for seeking formal consent from each respondent was mandated. In this section you will learn about the experiment that forced state administration to formulate ethical guidelines for informed consent.

Babbie (2015: 66) describes informed consent as, “A norm in which subjects base their voluntary participation in research projects on a full understanding of the possible risks involved”.

The case that questioned ethics in medical research and necessitated for a National Research Act to be established in the US is called Tuskegee Syphilis Experiments. The US Public Health Services started this research project in the year 1932. It went on till 1972 without ever being questioned for ethical morality. In this study 400 poor African men suffering with Syphilis were denied use of penicillin. By 1932, it was known that penicillin could cure Syphilis. Denial of treatment to these poor black Africans was the hypothesis that if we give treatment to them, we would not be able to understand the process of full progression of the disease. In simple terms, it implies that if you are suffering with an infection for which treatment is available but your doctor denies it to you wanting to observe how you respond to the infection without medicine and observes silently seeing you suffering.

But when the study was exposed in the public domain, then president of the United States, Richard Nixon had to offer a public apology and constitute a commission for deciding the guidelines for future research. The commission submitted a report known as The Belmont Report. It was on the basis of this report that the United States approved the National Research Act in 1974. It became a point of reference for all such future guidelines adopted by different research organisations across the World. The three key principles in this act are:

Respect for persons: to make research participants aware of the full consequences of experimentation and to protect people who are in confinement and are subjugated.
Beneficence: to ensure that no harm comes to the research participants and ideally they should benefit from it.
Justice: benefits of the research should be made equally available to all in the society.

What these principles emphasise is reiteration of the human rights approach. This approach is the crux of all anthropological research that deals with living human beings. It ensures that no harm comes to the subjects/respondents. There is a possibility of inadvertently causing psychological harm to the respondents e.g. on study of rape survivors: if you ask them to recall memories of physical and metal trauma that was caused by that event, they may experience depression. In such an instance one has indirectly caused harm to the respondent.

Sometimes researcher may assume that the questions being posed by her/him are value free and would not encroach on the privacy concerns of their respondents. Respondents may answer the questions but could carry scars or fears of having shared intimate details e.g. a study on HIV positive people may prompt him/her to share individual case history; but in the process may divulge details that encroach their privacy. Even when this information is collected under conditions of anonymity and confidentiality, it may leave them uncomfortable. Revisiting personal trauma and intimate details may impact their mental health and self-esteem. Researchers exploring sensitive issues like HIV/AIDS, mental Ethics in Research health, sexual behaviour or issues of physical or social exploitation must refrain from hurting the sentiments of the respondents; even if they have obtained informed consent.

The following are guidelines for developing an ethical sound study:

Explain clearly to potential research participants, the purpose of the study and why the study is being conducted;
Patiently answer all questions raised by them;
Specify the agency on whose behalf the research is being carried out;
Explain in simple language (particularly in a language that they are comfortable with) whether the purpose of your research is academic or for any other purpose e.g. marketing research, political opinion survey, mapping of behavioural change etc.;
Ask their permission to continue. If they decline, then simply withdraw. Ensure that their consent is sought in privacy. Researchers pursuing programmes in biological anthropology have to be particularly careful in seeking written formal consent. Written formal consent must be obtained before drawing a blood sample or taking physical measurements.

ANONYMITY AND CONFIDENTIALITY

Anthropological research often involves face-to-face interaction with the respondents. With the exception of archaeology and palaeontology, every other branch of the discipline encourages close contact with the subjects. Physical / biological and forensic anthropologists draw samples from known individuals and socio-cultural anthropologists pursue micro-studies that require meeting and recording of information. Protecting identity of the respondents thus becomes critical of an ethical study. Babbie (2015:68) explains anonymity as something which “is guaranteed in a research project when neither the researchers nor the readers of the findings can identify a given response with a given respondent.”

To ensure this, students are advised to use pseudonyms instead of real names of the respondents on the recording sheets. They should give code number to each respondent and keep the entries of interaction in the field diary without names. If respondents volunteer to record the interviews, ensure that their anonymity is maintained at all cost. Every research mandates anonymity but researchers have to be particularly careful while studying HIV+ people, victims of sex abuse, with sick people not wanting others to know the nature of their ailments, with people suspected of being involved in some crimes while doing forensic evaluation, and activists etc.

Maintaining anonymity is easier in mailed survey research. Questionnaires are mailed to prospective respondents and filled questionnaires are mixed for analysis. In the process neither the researcher nor the reader is ever able to ascertain the identity of the person.

But do remember that sustaining anonymity is a difficult task. While writing narrative research, there are moments, when consciously or unconsciously respondent identity is revealed. Researcher has to take extra caution to delete these direct references. In qualitative research breach of anonymity is a real possibility and requires immense monitoring.

Thus to maintain anonymity, strictly follow the instructions as detailed by Guthrie (2010): Interview notes and completed questionnaires should not have the names of interviewees written on them. Only a code number should identify interviewees (in a crime survey, we do not even identify individual respondents, but use only household IDs) Notes and questionnaires should be kept locked up and not left lying around. Never gossip about answers or respondents’ personal information with fellow researchers or friends or family. Do not tell funny stories about the people you interview

When you write up the report, you might well want to illustrate information about a group of people with some of their individual stories. These stories should be anonymous and written in such a way that readers cannot not identify the person. (Cf. Guthrie, 2010: 20)

Along with anonymity, confidentiality becomes equally critical. Babbie (2015:68) defines confidentiality as “A research project guarantees confidentiality when the researcher can identify a given person’s responses but promises not to do so publicly”.

To this definition, I would like to add that the premise of ethical research is to protect respondent confidentiality at all expense. There are cases when anthropologists have gone to prison or were threatened with dire consequences for refusing to divulge the source of their data.

Let me share a personal research experience that would help you understand the meaning of confidentiality and why it is essential for anthropological enquiry.

The year was 1975. I was in the middle of data generation, when a state of emergency was declared in the country. My research was on a sensitive issue of communal relations. Some of my respondents were witness to some episodes of communal violence that had occurred in the area. They agreed to give me recorded interviews. One of them was on the police list. One-day police came in search of that respondent, while he had come to my field residence. He escaped but to keep his anonymity and confidentiality, I destroyed all the tapes on which his narratives were recorded. I was pressurised by the state to share my data but to ensure respondent confidentiality, I opted to destroy the respondent’s recording rather than share it with the authorities or the state. If I had shared that information, I would have lost trust of all my respondents and would have never been able to go back to the field to complete my study.

DECEPTION

One of my students working on reproductive health was a young unmarried girl. When she went to the field for the first time, women refused to respond to her queries telling her that you are not married and would not understand the problems we have. She struggled for sometime and later decided to present herself to the respondents as a married woman with two small children. After this, she collected excellent data as her respondents wanted to get her advice on health issues, spacing of children and birth control methods. Concealing true identity or true purpose of research in ethical discourse is called ‘deception’. Researcher felt that this deception was harmless as it helped her generate better quality data. Here approach to the study was based on theoretical principle of consequentialism in which cost-benefit analysis is carried out individually by the researcher following her/ his own set of values. In such studies all actions are justified believing that it results in greater good.

In many laboratory or controlled experiments also subjects are not informed about the real purpose of their investigations. Researcher often believes that the subject is naïve and would not fully understand the purpose or importance of the study. They also argue that results of the study outweigh, ethical dilemma of informed consent.

Susceptibility to such temptations is significant in biological anthropology. Many times students desirous of collecting blood sample, or anthropometric measurements fudge their identities as professional medicos. Innocent subject seek their help and request for medication for treatment. When a non-medico gives any medication only to collect data, then it amounts to deception that may result in harming the subject. This is wrong and should be completely avoided.

Researchers across the world believe that at times fudging identity or purpose of research is unavoidable. In such situations they advise debriefing after the completion of the study. Debriefing implies going back to the researched population after the study to enquire if the research has had any adverse impact on them. Argument is that if one is not in a position to share the true intent of the experiment before the study, there is no harm in sharing it afterwards. Psychologists and communication studies including reality television often undertake these studies to assess public reactions in an emergency situation. Such experimental studies are called emergency bystander studies. (e.g. reality shows fudging identities to know public reactions to aggression, son preference and misogynistic attitude etc., and revealing true purpose of their experiment later. Some social scientists justify such experimental design for research, as they believe that disclosure after the experiment called debriefing neutralises any harm).

But it is important for you to understand that debriefing may create doubts in the minds of the subject. It may also cause psychological problems, if respondent starts worrying about his responses and if he performed well in the experiment or not. Experimental deception has its pros and cons and should be avoided. Researchers owe responsibility to their researched population and it is important that they share their identity as also the purpose of their research. 113 Clarke (1999:150) rightly concludes that, “debriefing can be effective in easing Ethics in Research the discomfort caused during a study or experiment involving deception, it is insufficient to fully reverse negative feelings experienced by those research subjects who are prone to have negative feelings about themselves, as a result of unexpected revelations about themselves in experiments”.

REPORTING AND FEEDBACK

Unfortunately over the years, researchers were not obliged to report back their findings to the community or the populations they surveyed. They would use their studies either to submit reports to their institutions, or publish papers in peer-reviewed journals. Some research findings do get reported in local or national newspapers but are not specifically displayed to the communities concerned. Contemporary research and ethical guidelines to research have now acknowledged this mandatory obligation to the communities. For instance, one does a study to examine iron or iodine deficiency in a population but has not shared the results with the people, leaving people to continue to suffer consequences of these deficiencies as they are not even aware. This would now be considered unethical. In social science research, study results may offend some people and they may question your motive for reporting these details. Initial surveys on drug abuse in Punjab received adverse response from the community, as they believed it had damaged their reputation and felt that the entire Punjabi population was targeted. In such a situation, you must accept their response calmly and respond as to why data collected by you arrived at these results. You can then disseminate the information to the community leaders and ask them to discuss it in Panchayat, village or community gatherings. I personally believe that before publication of any empirical data, the findings should be first shared with the community, get their feedback and then report to the peer community, wait for their comments and criticism of the methodology or findings and then take it to a broader platform.

ETHICAL GUIDELINES

In 1998 American Anthropological Association (AAA) defined ethical guidelines for research in different branches of anthropology that includes archaeology, linguistic, biological and socio-cultural anthropological research. In the five principles of their research code, they state:

Anthropological researchers have primary ethical obligations to the people, species, and materials they study and to the people with whom they work. These obligations can supersede the goal of seeking new knowledge, and can lead to decisions not to undertake or to discontinue a research project when the primary obligations conflicts with other responsibilities such as those owed to sponsors or clients… Anthropological researchers must do everything in their power to ensure that their research does not harm the safety, dignity, or privacy of the people with whom they work- (Principles A-1 and A- 2)

To meet challenges of studying communities in which some individuals may desire to share their opinions but others want to remain anonymous, Principle A-3 of AAA suggests that anthropological researchers must determine in advance whether their hosts/ providers of information wish to remain anonymous or receive recognition, and make every effort to comply with those wishes. (For e.g, some members of Adivasi/ tribal community may share their sacred rituals with the researcher but are not keen to make it public, it is imperative that a researcher must respect their wishes and however important these may be should not report in his/her writing).

Discussing challenges that field based research poses, Principle A-4 of AAA recommends, anthropological researchers should obtain in advance the informed consent of persons being studied, providing information, owning or controlling access to material being studied, or otherwise identified as having interests, which might be impacted by the research. (e.g. When you collect material objects, folklores or even take pictures of their traditional art and craft, costumes and jewellery, prior consent of the community is required. Some products of tribal art and craft blatantly copied and sold in the market without giving them patent or right over profits is unethical. Responsibility of the anthropologists is to take their consent before making any of these collected research material public). It is understood that the degree and breadth of informed consent required will depend on the nature of the project and may be affected by requirements of other codes, laws, and ethics of the country or community in which the research is pursued. Further, it is understood that the informed consent process is dynamic and continuous; the process should be initiated in the project design and continue through implementation by way of dialogue and negotiation with those studied.

One of the key components of anthropological methodology is prolonged stay with communities in their villages and communities. Researchers often use Participant, quasi-participant observations as preferred method for data collection/generation. It is important to exercise caution as this method involves developing close relations with key respondents and this requires special obligation to them. Principle A-5 of the AAA code advises: Anthropological researchers who have developed close and enduring relationships (i.e.; conventional relationship) with either individual persons providing information or with hosts must adhere to obligations of openness and informed consent, while carefully and respectfully negotiating the limits of the relationship.

While anthropologists may gain personally from their work, they must not exploit individuals, groups or, animals, or cultural or biological material. They should recognise their debt to the societies in which they work and their obligations to reciprocate with people studied in appropriate ways.

In addition to this these five principles, AAA’s ethical guidelines also explain:

In both proposing and carrying out research, anthropological researchers must be open about the purpose(s), potential impacts, and source(s) of support for research projects with funders, colleagues, persons studied or providing information, and with relevant parties affected by the research. Researchers must expect to utilise the results of their work in an appropriate fashion and disseminate the results through appropriate and timely activities. Research fulfilling these expectations is ethical, regardless of the source of funding. These ethical obligations include:

To avoid harm or wrong, understanding that the development of knowledge can lead to change, which may be positive, or negative.
To respect the well being of humans and nonhuman primates.
To work for long-term conservation of the archaeological, fossil, and historical records.
To consult actively with the affected individuals or group(s) with the goal or establishing a working relationship that can be beneficial to all parties involved.
Anthropologists owe special responsibility to public. They must ensure that their research does not harm the safety, dignity and, or privacy of the people with whom they work, conduct research or perform other professional activities.
They should not deceive or knowingly misrepresent (i.e. fabricate evidence, falsify, plagiarise), or attempt to prevent reporting of misconduct, or obstruct the scientific/ scholarly research of others.

These guidelines tell an anthropological researcher not to approach one’s field area blindly or simply because some funding agency is paying money to do research. You have to select not only the research problem but also the people that you are likely to interact with care. You have to assure that the questions that you ask, or blood sample or anthropological measurements that you take do not hurt your respondents. You must always ensure that you take prior consent.

In the domain of Indian anthropology, Indian Anthropological Association drafted a code of ethics and placed it in the public domain for discussion and suggestions. Some of the highlights of the recommendations are:

Respect for people’s rights, dignity, and diversity
Responsibility towards the research participants
Maintaining transparency
Obtaining informed consent
Confidentiality and anonymity of research participants
Scholarly obligations towards the discipline and colleagues
Abiding by the laws and relations with the governments
Observance of ethics while teaching anthropology

However, most researches, in particular medical anthropology and projects in biological anthropology follow ICMR guidelines. In the following section, a brief of these guidelines is given to you as a ready reckoner.

In 2017 Indian Council for Medical research (ICMR) issued national ethical guidelines for biomedical and health research involving human participants. This exhaustive document is a revised version of ethical guidelines that were issued in 1980 for the first time for medical research in India. This document gives explicit guidelines for research in social and behavioural sciences, for health, biological materials, biobanking and datasets, international collaboration and research during humanitarian emergencies and disasters. It has separate sections on responsible conduct of research, informed consent process, vulnerability, and public health. At the outset it explains, While conducting biomedical and health research, the four basic ethical principles namely; respect for persons (autonomy), beneficence, non-maleficence and justice have been enunciated for protecting the dignity, rights, safety and well being of research participants.

It then broadens these four basic ethical principles into 12 general principles and these include:

1) Principle of professional competence
2) Principle of voluntariness
3) Principle of non-exploitation
4) Principle of social responsibility
5) Principle of ensuring privacy and confidentiality
6) Principle of risk minimisation
7) Principle of social responsibility
8) Principle of maximisation of benefit
9) Principle of institutional arrangements
10) Principle of transparency and accountability
11) Principle of totality of responsibility
12) Principle of environmental protection

In addition to these general principles, it is important for you to note and remember the ICMR guidelines for Adivasi/tribal populations of India. Traditionally anthropologists were mostly associated with the study of small-scale Adivasi/ tribal societies but as the discipline expanded, its field of enquiry also diversified. Anthropologists have produced excellent research not only on tribal populations but also on villages and peasantry in India and have also explored several social problems that urban areas and communities are now experiencing. The AAA Ethics in Research (1998) and ICMR (2017) guidelines broadly cover all areas of research but if

any one of you decide to work on health or any other biological issues of Adivasi/

tribal people, you must strictly adhere to the following:

Research on tribal populations should be conducted only if it is of a specific therapeutic, diagnostic and preventive nature with appropriate benefits to the tribal population. (e.g. study on persistence of fluorosis, prevention of malaria or other epidemics

Due approval from competent administrative authorities, like the tribal welfare commissioner or district collector, should be taken before entering tribal areas.

Whenever possible, it is desirable to seek help of government functionaries/ local bodies or registered NGOs who work closely with the tribal groups and have their confidence.

Where a panchayat system does not exist, the tribal leader, other culturally appropriate authority or the person socially acceptable to the community may serve as the gatekeeper from whom permission to enter and interact should be sought. (Most adivasi communities have Jati Panchayats and they play very important role in decision making, it would thus be important for every researcher to contact the Jati Pramukh ( head of the community .

Informed consent should be taken in consultation with community elders and persons who know the local language/dialect of the tribal population and in the presence of appropriate witnesses.

Even with permission of the gatekeeper, consent from the individual participant must be sought.

Additional precautions should be taken to avoid inclusion of children, pregnant women and elderly people belonging to particularly vulnerable tribal groups (PVTG).(As you know many particularly vulnerable groups are on the verge of extinction, any contact with outsiders exposes them to infections and further endangers their lives. There are also isolated groups like the Sentineles that shun interactions with outsiders. You must respect their sentiments and must never intrude into their domain, whatever research incentives may be give to you.)

Benefit sharing with the tribal group should be ensured for any research done using tribal knowledge that may have potential for commercialisation.

(cf. ICMR ethical guidelines (2017) accessed on 6.03.2019)

Most of these guidelines follow by and large the same principles.