Module 3: Overview of Ethics and Research

The Role of NGOs in Research

NGOs, or non-governmental organizations, play an important role in the research community.  They tend to be closely connected with the communities they serve and therefore have a greater capacity to direct research where it is needed.  NGOs shape research priorities, advocate for more relevant research, utilize research findings effectively, and generate new knowledge in areas where they may have a comparative advantage.  Because they are not affiliated with a specific government, NGOs can avoid the bureaucratic processes that often delay and complicate the research process.(1)  They also tend to have a specific focus, and through experience, gain the expertise necessary to help expand the research surrounding that area of interest. The body of research can then be integrated into the larger discourse of global health and can help guide policymakers and to the most effective decisions.

“As researchers or research partners, NGOs have a responsibility to ensure that ethical issues are addressed in both the design and conduct of the research. There are distinctive challenges in conducting health research in developing countries, namely to fulfill moral duties of justice and respect in the face of poverty, lack of resources and the potential for exploitation… As NGO research is often conducted among the most vulnerable populations, where power relations are tipped in favor of researchers and those who are literate and eloquent, issues of informed consent and participants' understanding of it and the research, as well as participants having access to the benefits of research, are of special concern.(2)

As Delisle and colleagues aptly state, NGOs are often in a unique position when conducting research.  Because of some of the factors that are outlined in the quote above, there is a power differential between the researchers and the studied community or population.  Although this is usually the case in any kind of research, it is especially important for researchers to be aware of it when researching in developing countries.(3)  Although furthering empirical knowledge is the intended end of research, the means by which that end is met are also very important.  A researcher must always consider the treatment of his or her participants before considering the potential knowledge gained through a research project.  No matter how important a researcher may think his or her project is, it is never important enough to put participants through an unethical procedure.  Part of the challenge of being a good researcher is developing research methods that both answer complicated questions and adhere to the highest ethical standards.

The Field of Research Ethics

Oftentimes, a solid background in research ethics is overlooked or shortchanged in favor of a focus on research.  This is not merely a detriment to the participants in any research project, but also to those conducting the project.  A well-designed and thoroughly vetted study gets better results, is more readily replicable, and will likely have fewer confounding variables than one which was not designed with ethical considerations in mind.  The World Health Organization states that “training in research ethics should be strengthened for investigators in both resource-poor and industrialized nations.”(4)Furthermore, they recommend that research ethics be a required course at both undergraduate and graduate levels, and that experience with research ethics be a prerequisite condition for research grants or approvals.(5)  Whether or not a researcher has formal training in the ethics of study design, it is vital that he or she gain a working knowledge in the field.

The Importance of IRB Approval

As we will see in Module 7: Researcher Responsibilities, Institutional Review Boards (IRBs) act as a check against possible ethical violations, whether intentional or unintentional, on the part of the researcher.  For a researcher, following IRB guidelines when designing a study is absolutely essential because ethics in research is a fundamental issue rather than a post-design consideration.  In the case of research in developing countries, “the United States Office of Protection from Research Risks (the precursor to OHRP) issued a guidance document stating that IRBs must ensure that they have sufficient knowledge of the local context to assess adequately the risks of study participation for individuals and communities.”(6)  Culturally sensitive research methods and design are a key component to successful research in developing countries.

Entering Communities

According to a report published by the World Health Organization, “The need for sound frameworks in ethical research practice at the global level most especially in developing countries is at the top of the agenda of health promotion and research today.”(7)  An important part of ethical research design is knowing how to enter a community as a researcher.  However, this is seldom as simple as merely traveling to a different geographical location.  Every community has a unique culture that requires the researcher to make special considerations and adapt his or her methodology accordingly. 

“Entering ‘communities’ for health research requires special skills if research is to be conducted in an ethically sound manner. The problems that researchers face differ from one community to another. There are different types of communities – some are easy to reach (e.g., students) while others are hard to (e.g., drug users). Factors like social organisation, political system, and worldview shape mode of access. There are other factors like belief-system, gender, family structure, and social networking. Overall, the extent to which the targeted individuals and communities comprehend perceived benefits and harm including the researcher’s, and/or sponsor’s reputation as well as institutional integrity play a role in access to community and procurement of consent.”(8)

We will review more about these special considerations in Module 5: Culture, Language Barriers, and Interpreters.

Participants’ Rights

What does it mean to be a participant in a research study?  Family Health International states that “The Common Rule defines research participants as living individuals about whom a researcher (whether professional or student) conducting research obtains data through intervention or interaction
with the individual or identifiable private information.”(9)  A participant should always be valued and treated with respect.  In fact, “the first level of responsibility is to develop scientifically and technically correct research protocols, placing the welfare of the participants above the interests of science and society.”(10)  As we will see in our next module, the researcher has a special set of responsibilities to the participant that he or she must fulfill in order to perform research in an ethical manner.

Go To Module 4: Consent, Privacy, and Confidentiality >>

Footnotes

(1) Delisle, H. et. al. “The Role of NGOs in Global Health Research for Development” Health Research Policy and Systems. Vol. 3, No. 3., 2005.  Accessed 2/13/09.

(2) Delisle, H. et. al. “The Role of NGOs in Global Health Research for Development” Health Research Policy and Systems. Vol. 3, No. 3., 2005.  Accessed 2/13/09.

(3) Benatar, S. R.  “Reflections and Recommendations on Research Ethics in Developing Countries” Social Science and Medicine, Vol. 54, Issue 7 (April 2002), pp 1131-1141.

(4) Marshall, P. A.  “Ethical Challenges in Study Design and Informed Consent for Health Research in Resource-Poor Settings”  Special Topics in Social, Economic and Behavioral Research No. 5, pp. 1.  Accessed on 2/17/09.

(5) Erinosho, Olayiwola, ed.  “Ethics for Public Health Research in Africa” Proceedings of an International Workshop in collaboration with the Special Programme for Research and Training in Tropical Diseases (TDR) of the World Health Organisation, with the support of the Federal Ministry of Health, Abuja, Nigeria, April 21-23, 2008.  Accessed 2/17/09.

(6) Marshall, P. A.  “Ethical Challenges in Study Design and Informed Consent for Health Research in Resource-Poor Settings”  Special Topics in Social, Economic and Behavioral Research No. 5, pp. 17.  Accessed on 2/17/09.

(7) Erinosho, Olayiwola, ed.  “Ethics for Public Health Research in Africa” Proceedings of an International Workshop in collaboration with the Special Programme for Research and Training in Tropical Diseases (TDR) of the World Health Organisation, with the support of the Federal Ministry of Health, Abuja, Nigeria, April 21-23, 2008.  Accessed 2/17/09.

(8) Erinosho, Olayiwola, ed.  “Ethics for Public Health Research in Africa” Proceedings of an International Workshop in collaboration with the Special Programme for Research and Training in Tropical Diseases (TDR) of the World Health Organisation, with the support of the Federal Ministry of Health, Abuja, Nigeria, April 21-23, 2008.  pp. 32. Accessed 2/17/09.

(9) “Research Ethics Training Curriculum: Responsible Conduct of Research: Who Are Research Participants?”  Family Health International.  Accessed 2/12/09.

(10) “Research Ethics Training Curriculum: Responsible Conduct of Research: Researchers’ Responsibilities”  Family Health International.  Accessed 2/12/09.