Perspectives regarding privacy in clinical research among research professionals from the Arab region: an exploratory qualitative study
BMC Medical Ethics 21 (1):1-16 (2020)
AbstractBackground 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 ; during research, and after the research. 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.
Similar books and articles
Ethical Issues in Qualitative Nursing Research.Immy Holloway & Stephanie Wheeler - 1995 - Nursing Ethics 2 (3):223-232.
A Qualitative Study on Acceptable Levels of Risk for Pregnant Women in Clinical Research.Indira S. E. Van der Zande, Rieke van der Graaf, Martijn A. Oudijk & Johannes J. M. van Delden - 2017 - BMC Medical Ethics 18 (1):35.
A Qualitative Study on Acceptable Levels of Risk for Pregnant Women in Clinical Research.Indira S. E. van der Zande, Rieke van der Graaf, Martijn A. Oudijk & Johannes J. M. van Delden - 2017 - BMC Medical Ethics 18 (1).
Engaging Diverse Social and Cultural Worlds: Perspectives on Benefits in International Clinical Research From South African Communities.Olga Zvonareva, Nora Engel, Eleanor Ross, Ron Berghmans, Ames Dhai & Anja Krumeich - 2015 - Developing World Bioethics 15 (1):8-17.
Healthcare Professionals' and Researchers' Understanding of Cancer Genetics Activities: A Qualitative Interview Study.N. Hallowell, S. Cooke, G. Crawford, M. Parker & A. Lucassen - 2009 - Journal of Medical Ethics 35 (2):113-119.
What Enables Ethically Conducted Clinical Research in Hospitals? Views of the Administrative Staff.Sanna-Maria Nurmi, Mari Kangasniemi, Arja Halkoaho & Anna-Maija Pietilä - 2016 - Clinical Ethics 11 (4):166-175.
A Philosophical Analysis of Research in the Medical Sciences: The Qualitative-Quantitative Divide is Cultural Rather Than Epistemic.Jessica A. Stockdale - unknown
The Essential Fit Between Qualitative Methodology and Emirati Population: Towards Meaningful Social Science Research in UAE.Shaima Ahammed - 2015 - Social Epistemology 29 (3):344-358.
Informed Consent Document and Process in India: Ethical and Quality Issues.Madhuri Patel, Kannan Sridharan & Jayesh Patel - 2016 - Asian Bioethics Review 8 (1):37-52.
Privacy, Informed Consent, and Participant Observation.Julie Zahle - 2017 - Perspectives on Science 25 (4):465-487.
Barriers to the Ethics Committee in India: Ethical and Quality Issues.Madhuri Patel, Kannan Sridharan & Jayesh Patel - 2016 - Asian Bioethics Review 8 (2):81-93.
Biobank Research and the Right to Privacy.Lars Øystein Ursin - 2008 - Theoretical Medicine and Bioethics 29 (4):267-285.
Clinical Research Law in Jordan: An Ethical Analysis.Henry Silverman Ibrahim Ramahi - 2009 - Developing World Bioethics 9 (1):26-33.
Doing What's Right: The Development of Research Ethics by Experienced Qualitative Researchers.Sandra Joyce Mace Gaston - 1998 - Dissertation, Texas a&M University
Added to PP
Historical graph of downloads
Citations of this work
How to Navigate the Application of Ethics Norms in Global Health Research: Reflections Based on Qualitative Research Conducted with People with Disabilities in Uganda.Christina Zarowsky, Béatrice Godard, Kate Zinszer, Louise Ringuette & Muriel Mac-Seing - 2021 - BMC Medical Ethics 22 (1):1-7.
References found in this work
“Strongly Recommended” Revisiting Decisional Privacy to Judge Hypernudging in Self-Tracking Technologies.Marjolein Lanzing - 2019 - Philosophy and Technology 32 (3):549-568.
“It’s all about trust”: reflections of researchers on the complexity and controversy surrounding biobanking in South Africa.Keymanthri Moodley & Shenuka Singh - 2016 - BMC Medical Ethics 17 (1):57.
What Egyptians Think. Knowledge, Attitude, and Opinions of Egyptian Patients Towards Biobanking Issues.Ahmed S. Abdelhafiz, Eman A. Sultan, Hany H. Ziady, Ebtesam Ahmed, Walaa A. Khairy, Douaa M. Sayed, Rana Zaki, Merhan A. Fouda & Rania M. Labib - 2019 - BMC Medical Ethics 20 (1):1-10.