Work

A qualitative study of Institutional Ethics Committees: Members’ understanding of research guidelines, privacy, and challenges to privacy protection

Year: 2018

Type: article

Abstract: Right to privacy of health-related information is a foundational bioethical principle. In India, the importance of protecting privacy is included in law and ethical guidelines. Institutional Ethics Committees (IECs) are entrusted with the responsibility of protecting fundamental ethical principles, including privacy and confidentiality. The present qualitative study was designed to understand IECs' privacy-related obligations and the members' experience in implementing ethical guidelines and privacy protections in their institutions. An interview guide was prepared regarding knowledge of ethical guidelines. Interviews of nineteen IEC members were recorded, transcribed, and translated. Interviews were analysed using thematic analysis. Themes related to these issues were extracted after analysis: awareness, understanding, and implementation of ethical guidelines; understanding of privacy-related obligations and their implementation; and juridical risks to privacy of patients and research participants. The results suggest that training programmes and awareness workshops should be organised for IEC members to protect the rights of research participants, especially in confidentiality issues.

Source: Indian Journal of Medical Ethics

DOI: 10.20529/ijme.2018.054

Authors: Nagendra Mishra, Triptish Bhatia, Vishwajit Nimgaonkar, Smita Deshpande, Lisa Parker

Institutions: Babasaheb Bhimrao Ambedkar Bihar University, Atal Bihari Vajpayee Institute of Medical Sciences and Dr. Ram Manohar Lohia Hospital, Post Graduate Institute of Medical Education and Research, University of Pittsburgh

Language: English

Topic: Ethics in Clinical Research

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

SDGs: Peace, justice, and strong institutions, Good health and well-being

Open Access status: diamond

Funders: National Institute of Mental Health, Fogarty International Center