Qunita Brown’s Post

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

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.

🚨 New Article Alert! 🚨 Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa by Nezerith Cengiz, Siti Kabanda, Keymanthri Moodley. We're excited to announce the release of our latest article that explores the complex world of data sharing in research within sub-Saharan Africa! 🌍📊 In today's digital age, data-intensive research and AI are transforming how we handle information, but challenges like ambiguous regulations, conflicting interests, and technical expertise gaps are hindering successful data sharing. Traditional ethics oversight mechanisms struggle to address these challenges, especially in African contexts. Our study delves into: 🔹 REC members' experiences reviewing data sharing protocols 🔹 Perceptions of data transfer tools and agreements 🔹 Ethical, legal, and social challenges surrounding data sharing—confidentiality, consent, and more! We conducted in-depth interviews across the region, revealing a clear need for better awareness of data protection laws and training for REC members. 📢 If you're involved in research, ethics, or data science, this article offers crucial insights and recommendations for developing guidelines that promote ethical and efficient data sharing in Africa. Don’t miss out—read the full article and stay ahead of the conversation! https://lnkd.in/dMdAnxea #DataSharing #EthicsInResearch #AI #Africa #DigitalTransformation #ResearchEthics #DataProtection #Research

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 have just enjoyed a hugely informative session with the Laidlaw Foundation Deep Dive sessions about research ethics with Kelci Jacoby. A presentation from Simon Gardiner gave a great variety of examples to consider, and stimulated our group discussions both around existential research questions and the particulars of our own current research projects. For me, among the most salient was a discussion around the importance of ethical guidelines. For my research the prioritisation of children's voices has been a key consideration, and this discussion highlighted the importance of this as an institutional value. Further discussions around motivation added insight to this - our own backgrounds and reasons for researching can colour our views of research in ways we may not fully appreciate. Ethical guidelines and codes create (as far as we can hope) a neutral and protective basis from which we can all work, ensure ethics is at the heart of all we do as researchers. Within my research, particularly as a disabled researcher working with disabled children (as well as their families and wider network), the phrase "nothing about us, without us" often guides my planning. I feel it is hygely important to center their voices, giving children the opportunity to guide interviews and therefore my research to areas which are most central to them. I feel priviledged to explore the huge spectrum of experiences of the children and adults I am working with, and acknowledging my own biases and understanding gaps around experiences of disability has helped me to ensure ethics is consciously and constantly central to my research process. I'm grateful for these opportunities to connect with fellow Laidlaw scholars and hear from experts in research in an interdisciplinary and open space. These key takeaways will guide my research in the weeks (and years) to come!

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

Understanding the Delays in Protocol Approvals by Research Ethics Committees (RECs) in Uganda Navigating the approval process for research protocols through Research Ethics Committees (RECs) in Uganda can often feel like an uphill battle, fraught with delays and seemingly endless back-and-forth communication. This raises several critical questions: Why do these delays occur? Are RECs too stringent? Or are there deeper issues at play? One key factor contributing to these delays is the imbalance between the focus on scientific rigor and ethical soundness is another critical issue. Good science is intrinsically linked to good ethics; one cannot exist without the other. Failing to adhere to ethical guidelines not only endangers participants but also undermines the credibility and validity of the research itself. Another factor is the quality of submissions from investigators. Often, protocols lack essential details, particularly in the areas of ethical considerations and consent processes. This is not merely an oversight but a significant lapse that compromises the integrity of the study and participant safety. Lastly, in collaborative studies, particularly those involving international Principal Investigators (PIs), there is a tendency to prioritize international guidelines over local ones. This can lead to conflicts and omissions, as local guidelines are tailored to the unique ethical and cultural context of Uganda. It is crucial for all PIs to recognize and adhere to the National Guidelines for Research involving humans as research participants of 2014 and other local research guidelines to ensure comprehensive and contextually appropriate submissions. In my next post, I will provide a detailed guide on how to ensure your protocol is approved in the shortest time possible in Uganda. Stay tuned for practical tips and insights that will help streamline your submission process and enhance the quality of your research. Let's work together to bridge the gap between science and ethics, ensuring that our research upholds the highest standards of integrity and respect for all participants.

📝 ETHICS COMMITTEE 💬 Ethics Committee (EC) is composed of members with expertise in both scientific and nonscientific arenas which functions to ensure the protection of human rights and the well-being of research subjects based on six basic principles of autonomy, justice, beneficence, nonmaleficence, confidentiality ... #Ethics committee role :- Ethics committee plays the pivotal role in ensuring that a trial is conducted in accordance with GCP guidelines and to safeguard the safety and well-being of subjects participating in a clinical trial. #Ethics committee purpose:- Ethics committees, or similar institutional mechanisms, offer assistance in addressing ethical issues that arise in patient care and facilitate sound decision making that respects participants' values, concerns, and interests. #Type of Ethics committee:- *Independent ethics committee (IEC) *Institutional Review Board( IRB) They play essential roles in the oversight and ethical review of clinical research protocols. #Independent ethics committee:- *It is not a part of institution or hospital or Research centre *It is an independent body without having any relationships with the institute *Most important point is , at present IEC only give approvals For BA/BE or CT studies of approved Drugs. #Institutional review board:- *It is formed by an institution that is hospital or Research centre *It reviews the documents/ protocols submitted by the institution for conducting clinical trials *It also performs ongoing review of the approved study at appropriate time intervals Ethics committee follows 6 basic principles:- 1. Autonomy: respect the patient’s right to act on his/her own value and choice. 2. Justice: fair treatment of the research subjects. 3. Beneficence: work for the benefit of the patient. 4. Nonmaleficence: primum non- nocere or first do no harm to the patient. 5. Confidentiality: privacy protection. 6. Honesty: truthfulness in terms of the study. EC Composition:- Most countries in Europe, the USA, and South Korea have a requirement of at least five members whereas recommendations in China and India need a minimum of seven members and a maximum of 12–15 members. The composition may be as follows:- 1. Chairperson 2. One - two persons from basic medical scientists 3. One - two clinicians 4. One legal expert 5. One social scientist 6. One philosopher / ethicist 7. One lay person 8. Member Secretary *NOTE* * Ethics committee shall consist of atleast 50% of its members who are not affiliated with institute or Organisation *Chairperson - who is not affiliated with the institute or Organisation shall be the Chairperson *Member Secretary - Shall be affiliated with the institute or Organisation * Form CT-01:- Application for registration or renewal of EC *Form CT-02:- Grant of registration of ethics committee related to CT or BA/ BE studies. *IRB or IEC should located in the same city as the site is within a 50 km radius

📢 Call for Abstracts International Business Ethics Conference   18 February, 2025 Brussels   KU Leuven, KBC Bank & Verzekering, and Vlerick Business School are delighted to announce a one-day international conference to be held in-person at the KBC offices in Brussels. We hope to welcome a diverse audience, including academics, entrepreneurs, policymakers, technology designers, insurers, and many others.   Keynote Speakers Olivia Gambelin (Ethical Intelligence) Krzysztof (Kris) Wojciechowski (Organon)   Conference Theme The goal of the conference is to focus on ethical questions, risks, and opportunities within businesses, institutions, and organizations. This reflection will ideally draw on various backgrounds, including philosophy, behavioral economics, management studies, law, etc.   Paper Topics We warmly welcome submission of abstracts for papers addressing a wide range of topics including, but not limited to:   ●           Ethical Dilemmas in Corporate Lobbying and Political Influence ●           Cognitive Biases and Group Pressure as Factors in Unethical Behavior ●           The Impact of Technology on Employment and the Ethics of Automation ●           Diversity, Equity, and Inclusion in the Workplace ●           Privacy and Data Collection in a Digital Age ●           Human Rights in Complex Global Supply Chains ●           Business Ethics of AI-driven decisions ●           The Role of Ethical Leadership in Preventing Scandals in the Financial Sector ●           Whistleblowing Policies and Protection of Whistleblowers within Organizations   Submission Instructions We welcome submissions of abstracts for papers (20 minutes). Abstracts should be submitted in two documents. The first document contains the presentation title, abstract (max. 400 words), and 3-5 keywords. The second document provides the name(s), affiliation(s), and contact details of the author(s).   The conference organizers value inclusivity and diversity. We especially encourage submissions from underrepresented groups.   Submission Deadline Abstracts should be submitted by email to businessethics@kuleuven.be no later than midnight (Brussels time) on 20 December 2024.   Peer Review Process All abstracts will undergo a blind peer-review process by the scientific committee of the conference. Applicants will receive notification of acceptance or rejection on or before 15 January 2025.   Award The scientific committee will present an award for the best paper. To select this, we will consider originality, scientific relevance, and methodological quality.   For further inquiries, please contact us at businessethics@kuleuven.be #business #ethics