29 found
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  1.  41
    A scoping review of genetics and genomics research ethics policies and guidelines for Africa.Joseph Ochieng, Nelson K. Sewankambo, John Barugahare, Betty Kwagala, Juli M. Bollinger, Erisa Mwaka, Betty Cohn & Joseph Ali - 2021 - BMC Medical Ethics 22 (1):1-15.
    BackgroundGenetics and genomics research (GGR) is increasingly being conducted around the world; yet, researchers and research oversight entities in many countries have struggled with ethical challenges. A range of ethics and regulatory issues need to be addressed through comprehensive policy frameworks that integrate with local environments. While important efforts have been made to enhance understanding and awareness of ethical dimensions of GGR in Africa, including through the H3Africa initiative, there remains a need for in-depth policy review, at a country-level, to (...)
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  2.  20
    Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda.Nelson K. Sewankambo, Joseph Ali, Deborah Ekusai-Sebatta, Erisa Mwaka, John Barugahare, Betty Kwagala & Joseph Ochieng - 2021 - BMC Medical Ethics 22 (1):1-9.
    BackgroundThe return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results.MethodsThis was a qualitative study that (...)
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  3.  31
    Research ethics and artificial intelligence for global health: perspectives from the global forum on bioethics in research.James Shaw, Joseph Ali, Caesar A. Atuire, Phaik Yeong Cheah, Armando Guio Español, Judy Wawira Gichoya, Adrienne Hunt, Daudi Jjingo, Katherine Littler, Daniela Paolotti & Effy Vayena - 2024 - BMC Medical Ethics 25 (1):1-9.
    Background The ethical governance of Artificial Intelligence (AI) in health care and public health continues to be an urgent issue for attention in policy, research, and practice. In this paper we report on central themes related to challenges and strategies for promoting ethics in research involving AI in global health, arising from the Global Forum on Bioethics in Research (GFBR), held in Cape Town, South Africa in November 2022. Methods The GFBR is an annual meeting organized by the World Health (...)
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  4.  54
    Research Ethics Capacity Development in Africa: Exploring a Model for Individual Success.Joseph Ali, Adnan A. Hyder & Nancy E. Kass - 2012 - Developing World Bioethics 12 (2):55-62.
    The Johns Hopkins‐Fogarty African Bioethics Training Program (FABTP) has offered a fully‐funded, one‐year, non‐degree training opportunity in research ethics to health professionals, ethics committee members, scholars, journalists and scientists from countries across sub‐Saharan Africa. In the first 9 years of operation, 28 trainees from 13 African countries have trained with FABTP. Any capacity building investment requires periodic critical evaluation of the impact that training dollars produce. In this paper we describe and evaluate FABTP and the efforts of its trainees.Our data (...)
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  5.  61
    Development of a research ethics knowledge and analytical skills assessment tool.Holly A. Taylor, Nancy E. Kass, Joseph Ali, Stephen Sisson, Amanda Bertram & Anant Bhan - 2012 - Journal of Medical Ethics 38 (4):236-242.
    Introduction The goal of this project was to develop and validate a new tool to evaluate learners' knowledge and skills related to research ethics. Methods A core set of 50 questions from existing computer-based online teaching modules were identified, refined and supplemented to create a set of 74 multiple-choice, true/false and short answer questions. The questions were pilot-tested and item discrimination was calculated for each question. Poorly performing items were eliminated or refined. Two comparable assessment tools were created. These assessment (...)
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  6.  60
    Exploring Institutional Research Ethics Systems: A Case Study From Uganda.Adnan A. Hyder, Joseph Ali, Kristina Hallez, Tara White, Nelson K. Sewankambo & Nancy E. Kass - 2015 - AJOB Empirical Bioethics 6 (3):1-14.
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  7.  34
    Ethical challenges in research on post-abortion care with adolescents: experiences of researchers in Zambia.Joseph M. Zulu, Joseph Ali, Kristina Hallez, Nancy E. Kass, Charles Michelo & Adnan A. Hyder - 2018 - Tandf: Global Bioethics:1-16.
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  8.  37
    If Research Is a Pillar of Health System Development, Why Only Focus on Clinical Trials?Bridget Pratt, Joseph Ali & Adnan A. Hyder - 2016 - American Journal of Bioethics 16 (6):14-17.
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  9.  15
    Defining Malaysia's health research ethics system through a stakeholder driven approach.Sean Tackett, Chirk Jenn Ng, Jeremy Sugarman, Esther Gnanamalar Sarojini Daniel, Nishakanthi Gopalan, Tivyashinee Tivyashinee, Adeeba Kamarulzaman & Joseph Ali - 2024 - Developing World Bioethics 24 (2):74-83.
    The need to understand the systems that support ethical health research has long been recognized, but there are limited descriptions of actual health research ethics (HRE) systems. Using participatory network mapping methods, we empirically defined Malaysia's HRE system. 13 Malaysian stakeholders identified 4 overarching and 25 specific HRE system functions and 35 actors internal and 3 external to the Malaysian HRE system responsible for those functions. Functions requiring the most attention were: advising on legislation related to HRE; optimizing research value (...)
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  10.  11
    Emerging Experiences with Virtual Clinical Ethics Consultation: Case Studies from the United States and Malaysia.Joseph Ali, Cynda H. Rushton, Mark T. Hughes, Mark Tan Kiak Min, Sharon Kaur & Eman Mubarak - 2023 - Journal of Clinical Ethics 34 (1):51-57.
    The COVID-19 pandemic has inspired numerous opportunities for telehealth implementation to meet diverse healthcare needs, including the use of virtual communication platforms to facilitate the growth of and access to clinical ethics consultation (CEC) services across the globe. Here we discuss the conceptualization and implementation of two different virtual CEC services that arose during the COVID-19 pandemic: the Clinical Ethics Malaysia COVID-19 Consultation Service and the Johns Hopkins Hospital Ethics Committee and Consultation Service. A common strength experienced by both platforms (...)
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  11.  14
    Assessing the Governance of Digital Contact Tracing in Response to COVID-19: Results of a Multi-National Study.Brian Hutler, Alessandro Blasimme, Rachel Gur-Arie, Joseph Ali, Anne Barnhill, Amelia Hood, Jeffrey Kahn, Nancy L. Perkins, Alan Regenberg & Effy Vayena - 2022 - Journal of Law, Medicine and Ethics 50 (4):791-804.
    This paper describes the results of a multi-country survey of governance approaches for the use of digital contact tracing (DCT) in response to the COVID-19 pandemic. We argue that the countries in our survey represent two distinct models of DCT governance, both of which are flawed. The “data protection model” emphasizes privacy protections at the expense of public health benefit, while the “emergency response model” sacrifices transparency and accountability, prompting concerns about excessive governance surveillance. The ethical and effective use of (...)
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  12.  5
    Research Ethics in Epidemics and Pandemics: A Casebook.Susan Bull, Michael Parker, Joseph Ali, Monique Jonas, Vasantha Muthuswamy, Carla Saenz, Maxwell J. Smith, Teck Chuan Voo, Katharine Wright & Jantina de Vries (eds.) - 2023 - Springer Verlag.
    This open access casebook addresses complex and important ethical challenges arising when health-related research in conducted in the context of epidemics and pandemics. This book provides contextually-rich real-world case studies illustrating research ethics issues encountered by researchers, ethics reviewers and regulators around the globe during the COVID-19 pandemic. The accompanying commentaries outline relevant conceptual approaches and ethical considerations. These promote understanding and reflection on relevant ethical issues, ethical approaches and competing considerations in a manner supporting thoughtful evaluation of their implications (...)
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  13.  21
    Assessing training needs in health research ethics: a case study from the University of Zambia School of Medicine.Gershom Chongwe, Bornwell Sikateyo, Linda Kampata, Joseph Ali, Kristina Hallez, Adnan A. Hyder, Nancy Kass & Charles Michelo - 2020 - Global Bioethics 31 (1):155-163.
    In many settings, and perhaps especially in low-middle income countries, training institutions do not adequately prepare their students for the ethical challenges that confront them in professional life. We conducted a survey to assess the training needs in research ethics among the faculty at the University of Zambia, School of Medicine using a structured questionnaire distributed to faculty members in January 2015. The study was approved by the University of Zambia Biomedical Research Ethics Committee. Seventy-five faculty members of various ranks (...)
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  14.  51
    Improving institutional research ethics capacity assessments: lessons from sub-Saharan Africa.Molly Deutsch-Feldman, Joseph Ali, Nancy Kass, Nthabiseng Phaladze, Charles Michelo, Nelson Sewankambo & Adnan A. Hyder - 2018 - Tandf: Global Bioethics:1-13.
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  15.  12
    Improving institutional research ethics capacity assessments: lessons from sub-Saharan Africa.Molly Deutsch-Feldman, Joseph Ali, Nancy Kass, Nthabiseng Phaladze, Charles Michelo, Nelson Sewankambo & Adnan A. Hyder - 2018 - Global Bioethics:1-13.
    The amount of biomedical research being conducted around the world has greatly expanded over the past 15 years, with particularly large growth occurring in low- and middle-income countries. This increased focus on understanding and responding to disease burdens around the world has brought forth a desire to help LMIC institutions enhance their own capacity to conduct scientifically and ethically sound research. In support of these goals the Johns Hopkins-Fogarty African Bioethics Training Program has, for the past six years, partnered with (...)
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  16.  25
    Promoting Justice in Locating and Tracking Research Participants Through Social Media.Michael J. DiStefano, Yonaira M. Rivera, Johannes Thrul & Joseph Ali - 2019 - American Journal of Bioethics 19 (6):71-73.
    Volume 19, Issue 6, June 2019, Page 71-73.
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  17.  22
    Ethical challenges in research on post-abortion care with adolescents: experiences of researchers in Zambia.Adnan A. Hyder, Charles Michelo, Nancy E. Kass, Kristina Hallez, Joseph Ali & Joseph M. Zulu - 2020 - Global Bioethics 31 (1):104-119.
    ABSTRACT Post-abortion care (PAC) research is increasingly being conducted in low- and middle-income countries (LMICs) to help reduce the high burden of unsafe abortion. This study aims to help address the evidence gap about ethical challenges that researchers in LMICs face when carrying out PAC research with adolescents. Employing an explorative qualitative approach, the study identified several ethics challenges encountered by PAC researchers in Zambia, including those associated with seeking ethics and regulatory approvals at institutional and national levels. Persistent stigma (...)
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  18.  21
    Improving institutional research ethics capacity assessments: lessons from sub-Saharan Africa.Adnan A. Hyder, Nelson Sewankambo, Charles Michelo, Nthabiseng Phaladze, Nancy Kass, Joseph Ali & Molly Deutsch-Feldman - 2020 - Global Bioethics 31 (1):120-132.
    ABSTRACT The amount of biomedical research being conducted around the world has greatly expanded over the past 15 years, with particularly large growth occurring in low- and middle-income countries (LMICs). This increased focus on understanding and responding to disease burdens around the world has brought forth a desire to help LMIC institutions enhance their own capacity to conduct scientifically and ethically sound research. In support of these goals the Johns Hopkins-Fogarty African Bioethics Training Program (FABTP) has, for the past six (...)
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  19.  20
    Providing monetary and non-monetary goods to research participants: perspectives and practices of researchers and Research Ethics Committees in Zambia.Adnan A. Hyder, Joseph Ali & Chris Mweemba - 2020 - Global Bioethics 31 (1):90-103.
    ABSTRACT There are disagreements among ethicists on what comprises an “appropriate” good to offer research participants. Debates often focus on the type, quantity, timing, and ethical appropriateness of such offers, particularly in settings where participants may be socio-economically vulnerable, such as in parts of Zambia. This was a Cross-sectional online survey of researchers and Research Ethics Committees (RECs) designed to understand practices, attitudes and policies associated with provision of goods to research participants. Of 122 responding researchers, 69 met eligibility criteria. (...)
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  20.  22
    The features and qualities of online training modules in research ethics: a case study evaluating their institutional application for the University of Botswana.Nancy E. Kass, Mary Kasule, Boikanyo Mokgweetsi, Kristina Hallez, Joseph Ali & Dolly Mogomotsi Ntseane - 2020 - Global Bioethics 31 (1):133-154.
    ABSTRACT Research ethics remains a cornerstone of the scientific enterprise as it defines the boundaries of responsible conduct of research. Our aim was to systematically identify, review and test online training courses in research ethics which could be considered most appropriate for future training at the University of Botswana (UB). We used an evaluative tool that included both descriptive and evaluative criteria for assessing the strengths, weaknesses and appropriateness of 10 online research ethics courses which are publicly accessible. We then (...)
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  21.  23
    Providing monetary and non-monetary goods to research participants: perspectives and practices of researchers and Research Ethics Committees in Zambia.Chris Mweemba, Joseph Ali & Adnan A. Hyder - 2018 - Tandf: Global Bioethics:1-14.
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  22.  11
    Providing monetary and non-monetary goods to research participants: perspectives and practices of researchers and Research Ethics Committees in Zambia.Chris Mweemba, Joseph Ali & Adnan A. Hyder - 2018 - Global Bioethics:1-14.
    There are disagreements among ethicists on what comprises an “appropriate” good to offer research participants. Debates often focus on the type, quantity, timing, and ethical appropriateness of such offers, particularly in settings where participants may be socio-economically vulnerable, such as in parts of Zambia. This was a Cross-sectional online survey of researchers and Research Ethics Committees designed to understand practices, attitudes and policies associated with provision of goods to research participants. Of 122 responding researchers, 69 met eligibility criteria. Responses were (...)
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  23.  31
    The features and qualities of online training modules in research ethics: a case study evaluating their institutional application for the University of Botswana.Dolly Mogomotsi Ntseane, Joseph Ali, Kristina Hallez, Boikanyo Mokgweetsi, Mary Kasule & Nancy E. Kass - 2019 - Global Bioethics:1-22.
    Research ethics remains a cornerstone of the scientific enterprise as it defines the boundaries of responsible conduct of research. Our aim was to systematically identify, review and test online training courses in research ethics which could be considered most appropriate for future training at the University of Botswana. We used an evaluative tool that included both descriptive and evaluative criteria for assessing the strengths, weaknesses and appropriateness of 10 online research ethics courses which are publicly accessible. We then assembled Focus (...)
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  24.  19
    Ethical guidelines for military-based health research: an unmet need in Africa?Julius Mbekem Nwobegahay, Joseph Ali, Adnan A. Hyder & Daniel Ter Goon - 2015 - South African Journal of Bioethics and Law 8 (2):11.
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  25.  13
    A case study of researchers’ knowledge and opinions about the ethical review process for research in Botswana.Dimpho Ralefala, Joseph Ali, Nancy Kass & Adnan Hyder - 2018 - Research Ethics 14 (1):1-14.
    Most countries, including Botswana, have established Institutional Review Boards to provide oversight of research involving human beings. Although much has been published on the structure and function of IRBs around the world, there is less literature that empirically describes the perspectives of stakeholders in low- and middle-income country settings regarding IRB processes. In this study, we employed primarily quantitative methods to examine the perceptions of researchers at the University of Botswana about the review of research protocols by local IRBs. Data (...)
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  26.  26
    Developing a competency framework for health research ethics education and training.Sean Tackett, Jeremy Sugarman, Chirk Jenn Ng, Adeeba Kamarulzaman & Joseph Ali - 2022 - Journal of Medical Ethics 48 (6):391-396.
    Health research ethics training programmes are being developed and implemented globally, often with a goal of increasing local capacity to assure ethical conduct in health-related research. Yet what it means for there to be sufficient HRE capacity is not well-defined, and there is currently no consensus on outcomes that HRE training programmes should collectively intend to achieve. Without defining the expected outcomes, meaningful evaluation of individual participants and programmes is challenging. In this article, we briefly describe the evolution of formal (...)
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  27.  18
    Ethical challenges in research on post-abortion care with adolescents: experiences of researchers in Zambia.Joseph M. Zulu, Joseph Ali, Kristina Hallez, Nancy E. Kass, Charles Michelo & Adnan A. Hyder - 2018 - Global Bioethics:1-16.
    Post-abortion care research is increasingly being conducted in low- and middle-income countries to help reduce the high burden of unsafe abortion. This study aims to help address the evidence gap about ethical challenges that researchers in LMICs face when carrying out PAC research with adolescents. Employing an explorative qualitative approach, the study identified several ethics challenges encountered by PAC researchers in Zambia, including those associated with seeking ethics and regulatory approvals at institutional and national levels. Persistent stigma around abortion and (...)
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  28. Evaluating institutional capacity for research ethics in Africa: a case study from Botswana. [REVIEW]Adnan A. Hyder, Waleed Zafar, Joseph Ali, Robert Ssekubugu, Paul Ndebele & Nancy Kass - 2013 - BMC Medical Ethics 14 (1):31.
    The increase in the volume of research conducted in Low and Middle Income Countries (LMIC), has brought a renewed international focus on processes for ethical conduct of research. Several programs have been initiated to strengthen the capacity for research ethics in LMIC. However, most such programs focus on individual training or development of ethics review committees. The objective of this paper is to present an approach to institutional capacity assessment in research ethics and application of this approach in the form (...)
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  29.  23
    Global Health Research Ethics (A ten part audio lecture series) – Edited by Jim Lavery. [REVIEW]Joseph Ali - 2010 - Developing World Bioethics 10 (3):172-173.
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