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.
ABSTRACT
Background & objectives: Mental health professionals have varied attitudes and views regarding informed consent and confidentiality protections in psychiatric research and clinical care. The present study was designed to understand the knowledge and views of mental health professionals (MHPs) regarding informed consent and confidentiality protection practices. Methods: Mental health professionals (n=121) who were members of the Delhi Psychiatric Society, were invited to participate in this questionnaire-based study of their knowledge and attitudes regarding informed consent and confidentiality. Half of them expressed willingness to discuss participation and gave initial oral consent (n=62); of these, 31 gave written informed consent to participate and completed the questionnaires. The questionnaires included both forced choice (yes / no / do not know) and open-ended questions. Questionnaires content reflected prominent guidelines on informed consent and confidentiality protection. Results: Attitudes of the majority of the participants towards informed consent and confidentiality were in line with ethical principles and guidelines. All expressed the opinion that confidentiality should generally be respected and that if confidentiality was breached, there could be mistrust of the professional by the patient/participant. The mean knowledge scores regarding informed consent and confidentiality were 8.55 ± 1.46 and 8.16 ± 1.29, respectively. Interpretation & conclusions: The participating mental health professionals appeared to have adequate knowledge of basic ethical guidelines concerning informed consent and confidentiality. Most respondents were aware of ethical issues in research. Given the small sample size and low response rate, the significance of the quantitative analysis must be regarded with modesty, and qualitative analysis of open-ended questions may be more valuable for development of future research. Increased efforts to involve mental health professionals in research on ethical concerns pertinent to their work must be made, and the actual practices of these professionals with regard to ethical guidelines need to be studied.
ABSTRACT
Privacy is a key component of individual autonomy, and a voluminous literature has established both its practical value in healthcare contexts and its status as a fundamental, but not absolute ethical right. Because the Right to Information Act (2005) permits citizens to gain information under government control, it might be thought to threaten the privacy of patients and research subjects, especially those in government institutions. It is important for clinicians, administrators, information officers, patients, and research subjects to understand that the RTI Act generally does not require or permit disclosure of personal health information to third parties. Only under unusual circumstances when the larger public interest is properly certified to warrant it, would information shared or created within the fiduciary relationships of clinical care or research be required to be disclosed. Against this background concerning the right to privacy and the RTI Act, we consider a 2007 legal case that used the RTI Act to expose patient information of a public official and argue that the "public interest" claimed in this case did not justify disclosure of the official's private health information. We conclude that the provisions of the RTI Act, when properly interpreted, are compatible with the important value of safeguarding patient privacy.