Vol , Issue Date of Publication: July 10, 2018
DOI: https://doi.org/10.20529/IJME.2018.054

Views
, PDF Downloads:

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

Nagendra N Mishra
Triptish Bhatia
Vishwajit L Nimgaonkar
Smita N Deshpande
Lisa S Parker
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 an 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.


Copyright and license
©Indian Journal of Medical Ethics 2018: Open Access and Distributed under the Creative Commons license ( CC BY-NC-ND 4.0),
which permits only non-commercial and non-modified sharing in any medium, provided the original author(s) and source are credited.

Full Text

HTML | PDF
Help IJME keep its content free. You can support us from as little as Rs. 500 Make a Donation