Challenges Faced by Research Ethics Committees in MENA: Informed Consent, Data Sharing, and Community Engagement in Genomic Research

A recent study by Mohammed, et al. (2024) titled “Opinions and Attitudes of research ethics committees in Arab countries in the Middle East and North African region toward ethical issues involving biobank research” published in Research Ethics shows that research ethics committees (RECs) in the Middle East and North Africa face challenges with informed consent, data sharing, and community engagement in biobank research.

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Research Ethics Committees in MENA struggle with informed consent, data sharing, and community engagement in genomic research.– Mohammed et al. 2024

The article delves into the ethical challenges that Research Ethics Committees (RECs) in Arab countries encounter when evaluating genomic research. It emphasizes critical issues such as informed consent, data sharing, and community engagement—areas that are particularly sensitive in the context of genomic studies. The study draws from a survey conducted among REC members in Egypt, Morocco, Sudan, and Jordan, providing insights into their perspectives and attitudes regarding these ethical challenges. The findings underscore the varying levels of awareness and preparedness among REC members when it comes to navigating the complex ethical landscape of genomic research. One of the key challenges highlighted is the process of obtaining informed consent. In genomic research, informed consent is not just a one-time event but an ongoing process that requires participants to understand the implications of sharing their genetic information. This becomes even more complex in Arab countries, where cultural and social norms may influence individuals’ willingness to participate or share sensitive data. Another significant issue is data sharing. Genomic research often involves large-scale data collection and sharing across borders, raising concerns about privacy, confidentiality, and the potential misuse of genetic information. REC members expressed varying degrees of concern and awareness regarding the ethical implications of data sharing, particularly in the absence of robust regulatory frameworks. Community engagement is also a critical aspect, as genomic research can have profound implications for entire communities. Engaging communities in the research process helps to ensure that their values, concerns, and interests are respected. However, the survey findings suggest that REC members may not always be fully equipped to assess the adequacy of community engagement efforts in genomic studies.

How the Study was Conducted

The authors employed a cross-sectional questionnaire to gather data from members of Research Ethics Committees (RECs) in Egypt, Morocco, Sudan, and Jordan. The questionnaire aimed to capture their opinions and attitudes towards ethical issues in genomic research. The responses were then analyzed using detailed statistical methods to identify trends and insights.

What the Authors Found

The authors found that research ethics committees (RECs) in the Middle East and North Africa face challenges with informed consent, data sharing, and community engagement in biobank research. The study posits that REC members had varied preferences for the type of consent, with broad consent being the most commonly used but opinions split between broad, specific, and dynamic consent. A slight majority of REC members believed that individual research results should be returned to participants if a medical intervention could address the genetic abnormality.

Why is this Important?

Ethical Standards: They highlight the need for clear ethical guidelines and training for Research Ethics Committees (RECs) in genomic research, ensuring that participants’ rights and well-being are protected.
Informed Consent: Understanding REC members’ preferences for different types of consent (broad, specific, and dynamic) can help in designing consent processes that are both ethical and practical.
Data Sharing and Community Engagement: The emphasis on data sharing and community involvement underscores the importance of transparency and trust in research, which can lead to better public support and participation.
Return of Results: The finding that many REC members support returning individual research results to participants can influence policies to ensure participants benefit directly from research findings, especially when medical interventions are possible.

What the Authors Recommended

• The authors suggest that Research Ethics Committee (REC) members should be better familiarized with the ethical requirements of biobank research. This includes understanding different types of consent and the implications of data sharing.
• The authors recommend conducting more research on the types of consent (broad, specific, and dynamic) and the use of Material/Data Transfer Agreements to ensure ethical standards are maintained.
• The study emphasizes the importance of involving the community in biobank governance and decision-making processes to build trust and ensure transparency.
• In addition, the study proposes that policies should be developed to address the return of individual research results to participants, especially when these results have potential medical benefits.

In conclusion, the study by Mohammed et al. sheds light on the complex ethical challenges faced by Research Ethics Committees in the Middle East and North Africa, particularly in the context of genomic research. The findings emphasize the need for more comprehensive ethical guidelines, enhanced training for REC members, and greater community involvement to ensure that genomic research is conducted with the highest ethical standards. By addressing these issues—ranging from informed consent to data sharing and community engagement—stakeholders can foster trust and transparency, ultimately improving the quality and impact of biobank research in the region.