Uppara Rajasekhar .’s Post

In 2024, HSE R&D made significant strides toward a nationally coordinated research ethics system, with our REC Reform Team working to streamline processes and foster a more efficient, inclusive approach to research ethics in the health and social care services. Supporting the REC community has been a central part of this effort. We’ve provided tailored training, resources, and opportunities for collaboration to promote shared learning and inclusivity. A highlight this year was the Diversity, Equality, and Inclusion Training workshop, held for REC Chairs and Deputy Chairs, emphasising the importance of diverse perspectives in research ethics. We also established the REC Managers Community of Practice (COP)—a space for REC Managers to connect, share insights, and work collaboratively. For many, this COP has improved their experience, turning what was once described as “a lonely space” into a network of support and shared learning. Given the success of the COP, this group will be widen to all publicly funded REC Managers in 2025. Mary Clare O' Hara, Programme Manager, HSE R&D, comments: "A strong research ethics system is built on collaboration, inclusivity, and shared learning. By fostering connections and embracing diverse perspectives in our REC community, we create a culture that supports progress and empowers those involved in research. When everyone’s contributions are valued, we lay the foundation for an agile research ethics system that enhances access to health research and ultimately improves health outcomes for patients, families, and communities.” Looking ahead, the REC Reform Team is committed to building on this progress in 2025, advancing our goal of a more streamlined health and social care research ethics system that enables high-quality research for all. ➡️ For more information read the HSE Roadmap for Reform of Health and Social Care Research Ethics Committees: https://lnkd.in/ejchgbxN HRCI - Health Research Charities Ireland Health Research Board (HRB) HRB National Clinical Trials Office (NCTO) HSE Library HSE Dublin and South East Health Service Executive HSE Patient and Service User Engagement HSE West North West HSE Mid West HSE Dublin and Midlands HSE Spark Innovation Programme

A very important document for those conducting non-interventional clinical research, giving significant clarity around the organisational and ethical relationships and plans under the new six Regional Health Areas emerging from what was the HSE.

I’m happy to share that I’ve obtained a new certification: Research Ethics from World Health Organization (WHO)! In this course, I gained a thorough understanding of research ethics, focusing on the roles and responsibilities of Research Ethics Committees (RECs), the importance of ethical oversight, and the WHO’s involvement in research ethics. I explored the historical development of research ethics, learning about key landmarks, people, events, and documents that have shaped ethical guidelines. The course introduced me to essential ethical principles like respect for persons, beneficence, and justice, along with practical guidelines, particularly in the context of developing countries. I learned how to evaluate risks and benefits in research, emphasizing the importance of balancing harm and benefit in study design. The course also covered the ethical considerations surrounding scientific validity and the use of placebos, as well as complex issues like deception in research. It highlighted the need for transparent and scientifically valid study designs, ensuring research upholds ethical standards. The course delved into vulnerabilities in research, addressing the special considerations required when working with vulnerable populations. I also explored the obligations researchers have to participants, including providing medical care, compensating for research-related harms, and offering post-trial benefits. Community engagement was another key focus, and I learned the importance of involving stakeholders and communities in the research process. Privacy and confidentiality were emphasized as crucial aspects of ethical research, along with the importance of informed consent. The course outlined the ethical guidelines for protecting participants’ rights, ensuring that informed consent is an ongoing process and that participants are fully aware of the risks and benefits. Issues like transparency, managing conflicts of interest, and handling scientific misconduct were also addressed, providing a comprehensive view of the ethical challenges researchers face. Overall, this course equipped me with the knowledge to navigate the ethical complexities of research, ensuring that I can conduct studies responsibly while safeguarding participants' rights and well-being.

Latest paper by Nezerith Cengiz and Siti Kabanda. Have a look, it is well written.

REDSSA is excited to announce the publication of a landmark research article titled "cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa" authored by Nezerith Cengiz, Siti Kabanda & Keymanthri Moodley. This comprehensive study, now available in PLOS One, provides an in-depth examination of the ethical considerations and dilemmas faced by Research Ethics Committees (RECs) in sub-Saharan Africa concerning data sharing. As global health initiatives increasingly rely on international data collaboration, the study sheds light on the critical balance required between advancing scientific research and protecting participant rights and privacy. This research is pivotal for shaping policies and frameworks that support ethical data sharing practices in the region. Key findings of the study: Ethical concerns: REC members highlighted significant ethical issues related to consent, data privacy, and the potential for misuse of shared data. Ensuring participant anonymity and safeguarding sensitive information were among the top concerns. Regulatory challenges: The study identified a lack of comprehensive and harmonized regulations to govern cross-border data sharing. REC members emphasized the need for stronger regulatory frameworks that align with both local and international standards. Need for capacity building: There is a pressing need for enhanced training and resources to support REC members in navigating the complexities of cross-border data sharing. Building capacity within RECs is essential for maintaining high ethical standards. Collaborative solutions: The research underscores the importance of developing collaborative frameworks that facilitate ethical data sharing while respecting local contexts and regulations. Promoting dialogue and cooperation among stakeholders is crucial for ethical research practices. Our research highlights the urgent need to address ethical challenges in cross-border data sharing. By enhancing regulatory frameworks and investing in capacity building, we can ensure that data sharing practices are ethical and beneficial for all stakeholders involved. The REDSSA project, funded by the NIH (DSI Africa 1U01MH127704-01), aims to advance ethical data science practices in sub-Saharan Africa through research, training and policy advocacy. This publication represents a key milestone in REDSSA's mission to support ethical research and data sharing in the region. For additional details and access to the full research article, please visit https://lnkd.in/d66F2w5y

ATTENTION CLINICAL ETHICISTS! We are conducting a research study exploring the impact of socioeconomic factors on clinical ethics practices, and we would like to invite you to participate in a brief online survey. Who We Are This research is being led by Cíntia Liara Engel, PhD, along with Callie Terris, JD, MS; with support from myself and Jeffrey S. Farroni, PhD, JD, from the University of Texas Medical Branch’s Institute for Bioethics and Health Humanities. Survey Overview The survey is designed for individuals working in the field of clinical ethics consultation and will take approximately 10 minutes to complete. It's a part of a study including interviews which you can sign up for if interested at the end of the survey. Your insights will help us better understand how socioeconomic constraints influence ethical decision-making in healthcare settings. Take the Survey Here: https://lnkd.in/g_XSSckY If you have any questions about the study, please contact the Principal Investigator (PI) at ciliarae@utmb.edu The University of Texas Medical Branch (UTMB) Institutional Review Board (IRB), will answer any questions about your rights as a research subject, and take any comments or complaints you may wish to offer. You can contact the UTMB IRB at IRB@UTMB.edu Thank you for your consideration and valuable time. Your participation will significantly contribute to advancing the field of clinical ethics.

In the world of clinical research, ethical oversight is key 🔑. Our latest blog post explores the critical role of Research Ethics Boards

💡⚕️ Dive into the complex world of medical ethics with our latest blog. Explore thought-provoking discussions, ethical dilemmas and teaching strategies to empower your students to navigate this critical subject with sensitivity and insight. Let's spark meaningful conversations in the classroom! 📚✨ 👉 https://buff.ly/3x2cKje #medicalethics #ethicalteaching #teacherresources #educationblog #bioethics #teachingethics #classroomdiscussion #healtheducation #ethicaldilemmas #teachingsensitiveissues #studentengagement #criticalthinking #medicaldecisionmaking #ethicsinclassroom #teachingmedicine

I don’t understand how strict the rules are in the research ethics process when conducting Indigenous research as an Indigenous scholar. Even if Indigenous scholars do the interviews with their community or family members, they still need to go through the whole process. I thought interviewing my family members in our Indigenous language would mean less risk of potential harm, so the research ethics regulations would have been different. Still, I struggled with the commentary in the application form: “How do you make sure that you do not harm this community? Provide a detailed answer.” It was my first experience working with the community; previously, I had interviewed Indigenous leaders and scholars but never community members. If only I could call my family “community members.” I asked my co-author, the non-Indigenous anthropologist, to help me with my research ethics application comments because I simply didn’t know how to address some of the questions. I called the research ethics board and asked them how I could harm or abuse my family members. The person on the phone sounded confused. They said it is mandatory for all researchers to provide a detailed response to that question. Some other questions were related to the Canadian Indigenous legislation rather than the Russian legislation. I was asked to provide a letter from the chief or any other authority showing that the community agreed to participate in the research. I said, “We don’t have the tribal system.”  But the REB was looking for another response. I needed clarification again, so I asked the co-author for help. She said she had encountered a similar ethics process years before while researching with my community. I realized the rules were created for non-Indigenous researchers who understand these questions. The research ethics board designed these questions for outsiders. Using Indigenous Knowledge of my family against their interests didn’t make sense to me. This situation left me wondering how other Indigenous scholars deal with the research ethics process while working with their communities and what challenges they encounter. #IndigenousResearch #researchethics