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1. Title Title of document A qualitative study of Institutional Ethics Committees: Members’ understanding of research guidelines, privacy, and challenges to privacy protection
 
2. Creator Author's name, affiliation, country Nagendra N Mishra; Langat Singh College, B. R. Ambedkar Bihar University, Muzaffarpur 842001, India
 
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4. Description 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.
 
5. Publisher Organizing agency, location Forum for Medical Ethics Society
 
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7. Date (YYYY-MM-DD) 2018-07-10
 
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9. Format File format HTML , PDF
 
10. Identifier Uniform Resource Identifier http://ijme.in/articles/a-qualitative-study-of-institutional-ethics-committees-members-understanding-of-research-guidelines-privacy-and-challenges-to-privacy-protection/
 
11. Source Title; vol., no. (year) Indian Journal of Medical Ethics;: Online First
 
12. Language English=en en
 
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