An online International Summer School Program on “Data, Monitoring and Evaluation” is a two-month immersive online hands-on certificate training course organised by IMPRI Impact and Policy Research Institute, New Delhi. The day 3 of the program on June 17th, started with a session on “Research Ethics in Primary Data Collection and Analysis” by Dr. Amar Jesani. The session was opened with introductory and welcoming remarks from Fiza Mahajan and was further moderated by her.
The session was opened by Fiza Mahajan, Visiting Researcher at IMPRI. She starts with details about the Program and provides a thematic view of the speakers who will be guiding during the program. She says that there will be numerous curated expert sessions on issues to learn the insights of theory, methods, tools, techniques, and applications. Then she welcomes the guest lecturer Dr. Amar Jesani. He is an independent researcher and a teacher of Bioethics & Public Health. He is also an Editor at the Journal of Medical Ethics. Prof Jesani started the session by introducing the domain of Ethics in Primary Data Collection and Analysis.
The importance of ethics in research is discussed, considering that research is carried out in a social context. Hence, it is affected by the power differentials and hierarchies in society. He emphasises the role of ethics as a field concerned with the rights of those on the “weaker side of the divide”. From this, he drew that the subject matter of Medical Ethics is the rights of the patients. Research Ethics are shown to be concerned with the rights and protection of the participants/subjects. The Ethics of Scientific Practice are mentioned to show its role in maintaining the integrity of the research.
The four parties involved and the power relations between them are stated by him. First, the relationship between the sponsors & funders of research with the researcher, along with the power that the former has over the latter in designing the research, is stated. Second, the role of gatekeepers in restricting and allowing access to researchers, thus, controlling the flow of information. Then, the various risks associated with the participants of research & citizens are elucidated upon, including the psychological risks, violation of confidentiality, stigmatisation, physical risks, etc.
Next, the eight benchmarks of ethical research are introduced by him. These include social value, scientific validity, favourable risk-benefit ratio, fair selection of study population, informed consent, respect for participants and communities, independent review, and collaborative partnerships.
The benchmark of social value is explained by highlighting the social benefit & impact that research can have on society, thus, making it important for researchers to consider the societal impact & progress that their research may have.
Scientific validity is underscored as an important benchmark to ensure that the research is ethically carried out, making it publishable in journals. In the same vein, Unscientific research is characterised as a waste of resources and may lead to harm to the people who read and are impacted by the research.
The six types of harm research can cause are listed to explain the factors involved in the risk-benefit ratio to ensure researchers account for them to ensure the risk is minimised. It is further linked by Dr Jesani with the benchmark of informed consent. The importance of the subject “understanding” the risks & details of the research is emphasised by him to minimise the risks of the research. This flow of information between the researcher to the subject is underlined.
Similarly, he highlighted that, while negotiating with gatekeepers, it is important that their power advantages do not compromise the ethics of the research & the privacy of the subjects. Furthermore, the confidentiality of the data & subjects and adherence to the confidentiality agreement drawn based on informed consent is underscored as an essential aspect of the researcher-subject relation.
Next, the role of independent review by research ethics committees is mentioned by him, and its role in regulating research and ensuring its ethical status.
It is explained by explaining the different sources and types of data in an institution. The delinking of data, i.e., the process of removing identifiable information through methods like anonymization & pseudonymization, is mentioned along with the various risks involved. The storage of data is underscored as another concern.
Furthermore, the concept of bio-banking is questioned, especially for for-profit purposes. The example of Henrietta Lacks is given to show how her cervical cells were taken in a biopsy by the John Hopkins Institution and were being used by them for commercial purposes without the knowledge of the family. She died of cancer, and her family remained poor, whereas the organisation earned a lot of money from her cells and data. Relatedly, the possibilities of misconduct in research are explained, including Data Fabrication in Data Collection, Data Falsification, Plagiarism, etc.
He mentions the prevalent arguments & public concerns surrounding treating data & research as a “public good”, which argue that data concerning public activities & concerns should be transparently presented in the public domain. The sharing of anonymized data with other researchers & institutions is shown as a concern, especially considering the issues of transparency, corruption, verifying the research & its results, etc. He further uses the example of academic journals changing their requirements & treatment of data, obligating the researchers to be transparent and open them up to questions. Dr Jesani concludes his presentation and opens the floor to questions.
The session ended with questions being posed by the audience. They were gracefully answered in detail by Dr Jesani.
Acknowledgement: Garvit Gupta is a research intern at IMPRI.
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