Perspectives regarding privacy in clinical research among research professionals from the Arab region: an exploratory qualitative study

Abstract

Background: Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research. Methods: We adopted an exploratory qualitative approach by the use of focus group discussions. We recruited individuals involved in research from Egypt and Morocco. We analyzed focus group data via a constant comparison approach, which consisted of close reading of the transcribed interviews followed by coding and then determining themes and subthemes.Results: Between August 2016 and July 2018, we conducted nine focus group discussions. Respondents discussed several privacy issues that occurred before the research began (e.g., recruitment practices); during research (e.g., data collection and physical exams), and after the research (e.g., secondary use of data and data sharing). Respondents revealed their perspectives of patients towards privacy in the clinical and research settings and mentioned that patients are more likely to permit access to their privacy in the clinical setting compared with research setting due to the existence of benefits and trust in clinical care. Respondents also recommended training regarding data protections for individuals involved in research. Conclusions: Our study shows that research professionals discussed a range of privacy issues that are present during the different stages of research. We recommend 1) development of standards regarding privacy protections during recruitment efforts; 2) additional training for individuals involved in research regarding best practices with data security in secondary research; 3) a quantitative study involving investigators and REC members to determine their knowledge, attitudes and practices regarding privacy issues that occur in research; and 4) a quantitative study involving patients to elicit their views regarding their privacy concerns in research.

<p>Perceptions Towards Medical Research Participation in Jordan: A Study from Jordan</p>

“…These include IRB approvals, informed consent process, privacy, confidentiality, and adequate ethics training. 19 – 25 Adoption of research ethics guidelines and implementation of training on responsible conduct of research (RCR) in the academic and research institution in the region might overcome most of such challenges. 21 , 26 , 27…”

“…This could also indicate the need to train researcher on best practices human research, research ethics, and protection for medical research subjects. 25 …”

“…This could also indicate the need to train researcher on best practices human research, research ethics, and protection for medical research subjects. 25 This study comes with some limitations, as the survey did not explore the effect of financial incentive that participants' may receive as a remuneration for their participation in medical research on their perception towards the participation in medical research. Future work should explore this in more detail.…”

“…These include IRB approvals, informed consent process, privacy, confidentiality, and adequate ethics training. [19][20][21][22][23][24][25] Adoption of research ethics guidelines and implementation of training on responsible conduct of research (RCR) in the academic and research institution in the region might overcome most of such challenges. 21,26,27 Notably, the current study has shown that previous participation in medical research was correlated with lower overall perception of values and ethics of research, yet, higher trust in research.…”

How to navigate the application of ethics norms in global health research: reflections based on qualitative research conducted with people with disabilities in Uganda

“…Finally, we suggest that a greater consideration of global health and disability as well as responsible conduct of research in normative documents be accompanied with more training on ethical issues for global health researchers and trainees. This last recommendation is also echoed in the literature on qualitative research and the importance of privacy [ 33 ]. For example, training can be offered before or during the research protocol development, with an emphasis on legal and ethical issues related to each step of the privacy cycle (data collection, utilisation, conservation and destruction) [ 34 ].…”