Download or read book Ethical Issues in Community and Patient Stakeholder Engaged Health Research written by Emily E. Anderson and published by Springer Nature. This book was released on 2023-10-31 with total page 326 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book provides in-depth analyses of a wide range of topics surrounding ethical issues in community and patient stakeholder–engaged health research, and highlights where consensus exists, is emerging, or remains elusive. Topics in this book cover the history of stakeholder engagement in health research; how codes of ethics and regulations have (or have not) addressed stakeholder engagement; how to promote equitable collaboration; the ethical perspectives of different stakeholders; and the unique challenges posed by stakeholder- engaged research to the protection of human research participants and the research ethics review process. The book includes discussion of unique issues that arise in stakeholder engagement relevant to different populations, settings, and research designs. This book is relevant for anyone with a role or interest in stakeholder-engaged research, including patient and community research partners; academic researchers; research ethics scholars and educators; and funders.

Download or read book The Ethics and Politics of Community Engagement in Global Health Research written by Lindsey Reynolds and published by Routledge. This book was released on 2020-06-09 with total page 201 pages. Available in PDF, EPUB and Kindle. Book excerpt: Drawing on a growing consensus about the importance of community representation and participation for ethical research, community engagement has become a central component of scientific research, policy-making, ethical review, and technology design. The diversity of actors involved in large-scale global health research collaborations and the broader ‘background conditions’ of global inequality and injustice that frame the field have led some researchers, funders, and policy-makers to conclude that community engagement is nothing less than a moral imperative in global health research. Rather than taking community engagement as a given, the contributions in this edited volume highlight how processes of community engagement are shaped by particular local histories and social and political dynamics, and by the complex social relations between different actors involved in global public health research. By interrogating the everyday politics and practices of engagement across diverse contexts, the book pushes conversations around engagement and participation beyond their conventional framings. In doing so, it raises radical questions about knowledge, power, expertise, authority, representation, inclusivity, and ethics and to make recommendations for more transformative, inclusive, and meaningful community engagement. This book was originally published as a special issue of the Critical Public Health journal.

Download or read book International Ethical Guidelines for Health Related Research Involving Humans written by Council for International Organizations of Medical Sciences (CIOMS) and published by World Health Organization. This book was released on 2017-01-31 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: "In the new 2016 version of the ethical guidelines, CIOMS provides answers to a number of pressing issues in research ethics. The Council does so by stressing the need for research having scientific and social value, by providing special guidelines for health-related research in low-resource settings, by detailing the provisions for involving vulnerable groups in research and for describing under what conditions biological samples and health-related data can be used for research."--Page 4 de la couverture.

Download or read book Ethics in Participatory Research for Health and Social Well Being written by Sarah Banks and published by Routledge. This book was released on 2018-08-06 with total page 248 pages. Available in PDF, EPUB and Kindle. Book excerpt: Participatory research is well-established as an approach involving people with a direct interest in, or experience of, the issue being studied in carrying out research. However, it raises unique and challenging ethical issues. Traditional concerns with respect for the rights to confidentiality, consent, privacy and protection of ‘research informants’ do not translate easily into participatory research. Boundaries between researchers and those researched are often blurred; research trajectories may be emergent and unpredictable; and major ethical issues revolve around partnership, power, equality and respect for diverse knowledges. The book introduces the key ethical issues in participatory research, drawing on ethical theory and relevant literature before presenting seven substantive chapters, each on a different theme, such as power, ownership, confidentiality and boundaries. The chapters feature an introductory overview of the topic with reference to the literature, followed by four real-life case examples written by participatory researchers and short commentaries on each case. Drawn from around the world (from Denmark to Tanzania), the cases illustrate a range of ethical issues, outlining how they were handled and the reflections and feelings of the contributors. Focusing on developing ethical awareness, confidence and courage to act in ethically challenging situations in everyday research practice, this book is an invaluable resource for all participatory researchers.

Download or read book Ethical Challenges in Study Design and Informed Consent for Health Research in Resource poor Settings written by Patricia A. Marshall and published by World Health Organization. This book was released on 2007 with total page 89 pages. Available in PDF, EPUB and Kindle. Book excerpt: This review considers ethical challenges to research design and informed consent in biomedical and behavioral studies conducted in resource-poor settings. A review of the literature explores relevant social, cultural, and ethical issues in the conduct of biomedical and social health research in developing countries. Ten case vignettes illustrate ethical challenges that arise in international research with culturally diverse populations. Recommendations for researchers and policy-makers concerned about ethical practices in multinational studies conducted in resource-poor settings are also listed.

Download or read book Sharing Research Data to Improve Public Health in Africa written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2015-09-18 with total page 126 pages. Available in PDF, EPUB and Kindle. Book excerpt: Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.

Download or read book Human Challenge Studies in Endemic Settings written by Euzebiusz Jamrozik and published by Springer Nature. This book was released on 2020 with total page 145 pages. Available in PDF, EPUB and Kindle. Book excerpt: This open access book provides an extensive review of ethical and regulatory issues related to human infection challenge studies, with a particular focus on the expansion of this type of research into endemic settings and/or low- and middle-income countries (LMICs). Human challenge studies (HCS) involve the intentional infection of research participants, and this type of research is rapidly increasing in frequency worldwide. HCS are widely considered to be an especially promising approach to vaccine development, including for pathogens endemic to LMICs. However, challenge studies are sometimes controversial and raise complex ethical issues, some of which are especially salient in endemic and/or LMIC settings. Informed by qualitative interviews with experts in infectious diseases and bioethics, this book highlights areas of ethical consensus and controversy concerning this kind of research. As the first volume to focus on ethical issues associated with human challenge studies, it sets the agenda for further work in this important area of global health research; contributes to current debates in research ethics; and aims to inform regulatory policy and research practice. Insofar as it focuses on HCS in (endemic) settings where diseases are present and/or widespread, much of the analysis provided here is directly relevant to HCS involving pandemic diseases including COVID19.

Download or read book The Oxford Handbook of Research Ethics written by Ana S. Iltis and published by Oxford University Press. This book was released on 2024 with total page 937 pages. Available in PDF, EPUB and Kindle. Book excerpt: The development of new pharmaceutical products and behavioral interventions aimed at improving people's health, as well as research that assesses the efficacy and cost-effectiveness of public policies, such as policies designed to improve children's education or reduce poverty, depends on research conducted with human participants. It is imperative that research with human subjects is conducted in accordance with sound ethical principles and regulatory requirements. Featuring 45 original essays by leading research ethicists, The Oxford Handbook of Research Ethics offers a critical overview of the ethics of human subjects research within multiple disciplines and fields, including biomedicine, public health, psychiatry, sociology, political science, and public policy.

Download or read book Ethics and Research with Children written by Eric Kodish and published by Oxford University Press. This book was released on 2018-11-26 with total page 345 pages. Available in PDF, EPUB and Kindle. Book excerpt: Fundamental questions about the morality of pediatric medical research persist despite years of debate and the establishment of strict codes of ethics. Is it ever permissible to use a child as a means to an end? How much authority should parents have over decisions about research involving their children? Should children or their parents be paid for participation in research? Most importantly, how can the twin goals of access to the benefits of clinical research and protection from research risk be reconciled? Promoting more thoughtful attention to the complex ethical problems that arise when research involves children, this fully updated new edition of Ethics and Research with Children presents 14 case studies featuring some of the most challenging and fascinating ethical dilemmas in pediatric research. Each chapter begins with a unique case vignette, followed by rich discussion and incisive ethical analysis. Chapters represent a host of current controversies and are contributed by leading scholars from a variety of disciplines that must grapple with how to best protect children from research risk while driving innovation in the fight against childhood diseases. Chapters end with questions for discussion, providing faculty and students with accessible starting points from which to explore more in depth the thorny issues that are raised. In the final chapter, the editors provide a synthesis and summary that serve as a capstone and companion to the case-based chapters. Unique in its specific focus on research, Ethics and Research with Children provides a balanced and thorough account of the enduring dilemmas that arise when children become research subjects, and will be essential reading for those involved with pediatric research in any context.

Download or read book When Science Offers Salvation written by Rebecca Dresser and published by Oxford University Press. This book was released on 2001-03-22 with total page 228 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biomedical research today has a high public profile, largely because of patient advocacy. Following in the footsteps of HIV/AIDS activists, advocates representing an array of patient groups are now vocal partners in the research enterprise. Advocates want research practices and policies to be more responsive to the people who must live with the burdens of illness. This book shows how advocates have transformed health research, often -- but not always -- for the better. Dresser is the first to examine patient advocacy through the lens of research ethics. She reveals the many ways in which a quest for cures and improved therapies shapes advocacy work. She exposes the bright and dark sides of patients' expanded opportunities to enroll in clinical trials and join researchers in planning and evaluating studies. She considers the virtues and drawbacks of giving patients more influence over how the government invests its research dollars. She argues that advocates should do more to promote ethical human studies and responsible media reporting about research. Patient advocates can help make research more ethical, but advocacy raises ethical issues of its own. This book clearly and vividly recounts the advocacy contribution to research and explores the thorny ethical issues facing research advocates.

Download or read book Community Based Participatory Research for Health written by Nina Wallerstein and published by John Wiley & Sons. This book was released on 2017-10-05 with total page 482 pages. Available in PDF, EPUB and Kindle. Book excerpt: The definitive guide to CBPR concepts and practice, updated and expanded Community-Based Participatory Research for Health: Advancing Health and Social Equity provides a comprehensive reference for this rapidly growing field in participatory and community-engaged research. Hailed as effective by the Centers for Disease Control and Prevention, CBPR and CEnR represent the link between researchers and community and lead to improved public health outcomes. This book provides practitioner-focused guidance on CBPR and CEnR to help public health professionals, students, and practitioners from multiple other clinical, planning, education, social work, and social science fields to successfully work towards social and health equity. With a majority of new chapters, the book provides a thorough overview of CBPR history, theories of action and participatory research, emerging trends of knowledge democracy, and promising practices. Drawn from a ten-year research effort, this new material is organized around the CBPR Conceptual Model, illustrating the importance of social context, promising partnering practices, and the added value of community and other stakeholder engagement for intervention development and research design. Partnership evaluation, measures, and outcomes are highlighted, with a revised section on policy outcomes, including global health case studies. For the first time, this updated edition also includes access to the companion website, featuring lecture slides of conceptual and partnership evaluation-focused chapters, with resources from appendices to help bring CBPR concepts and practices directly into the classroom. Proven effective year after year, CBPR has become a critically important framework for public health, and this book provides clear reference for all aspects of the practice. Readers will: Examine the latest research on CPBR, and incorporate new insights into practice Understand the history and theoretical basis of CPBR, and why it has been so effective Reflect on critical issues of racism, power, and privilege; trust development; ethical practice within and beyond IRBs; and cultural humility Learn new partnership evaluation and collective reflection strategies, including measures and metrics, to enhance their own practice for improved health and social equity outcomes

Download or read book Community based Participatory Research written by United States. Agency for Healthcare Research and Quality and published by . This book was released on 2004 with total page 8 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Download or read book Artificial Intelligence in Brain and Mental Health Philosophical Ethical Policy Issues written by Fabrice Jotterand and published by Springer Nature. This book was released on 2022-02-11 with total page 270 pages. Available in PDF, EPUB and Kindle. Book excerpt: This volume provides an interdisciplinary collection of essays from leaders in various fields addressing the current and future challenges arising from the implementation of AI in brain and mental health. Artificial Intelligence (AI) has the potential to transform health care and improve biomedical research. While the potential of AI in brain and mental health is tremendous, its ethical, regulatory and social impacts have not been assessed in a comprehensive and systemic way. The volume is structured according to three main sections, each of them focusing on different types of AI technologies. Part 1, Big Data and Automated Learning: Scientific and Ethical Considerations, specifically addresses issues arising from the use of AI software, especially machine learning, in the clinical context or for therapeutic applications. Part 2, AI for Digital Mental Health and Assistive Robotics: Philosophical and Regulatory Challenges, examines philosophical, ethical and regulatory issues arising from the use of an array of technologies beyond the clinical context. In the final section of the volume, Part 3 entitled AI in Neuroscience and Neurotechnology: Ethical, Social and Policy Issues, contributions examine some of the implications of AI in neuroscience and neurotechnology and the regulatory gaps or ambiguities that could potentially hamper the responsible development and implementation of AI solutions in brain and mental health. In light of its comprehensiveness and multi-disciplinary character, this book marks an important milestone in the public understanding of the ethics of AI in brain and mental health and provides a useful resource for any future investigation in this crucial and rapidly evolving area of AI application. The book is of interest to a wide audience in neuroethics, robotics, computer science, neuroscience, psychiatry and mental health.

Download or read book Returning Individual Research Results to Participants written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2018-08-23 with total page 399 pages. Available in PDF, EPUB and Kindle. Book excerpt: When is it appropriate to return individual research results to participants? The immense interest in this question has been fostered by the growing movement toward greater transparency and participant engagement in the research enterprise. Yet, the risks of returning individual research resultsâ€"such as results with unknown validityâ€"and the associated burdens on the research enterprise are competing considerations. Returning Individual Research Results to Participants reviews the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. This report includes 12 recommendations directed to various stakeholdersâ€"investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participantsâ€"and are designed to help (1) support decision making regarding the return of results on a study-by-study basis, (2) promote high-quality individual research results, (3) foster participant understanding of individual research results, and (4) revise and harmonize current regulations.

Download or read book Registries for Evaluating Patient Outcomes written by Agency for Healthcare Research and Quality/AHRQ and published by Government Printing Office. This book was released on 2014-04-01 with total page 385 pages. Available in PDF, EPUB and Kindle. Book excerpt: This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

Download or read book Comprehensive Healthcare Simulation Pharmacy Education Practice and Research written by Yaser Mohammed Al-Worafi and published by Springer Nature. This book was released on 2023-08-28 with total page 278 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book provides comprehensive information about simulation in pharmacy education, practice and research. It serves as a source for guiding pharmacy academics, clinicians, researchers, supervisors, trainers, and students who wish to learn more about and introduce simulation in pharmacy education, practice and research. Furthermore, this book describes the current practice, the facilitators and barriers for implementing evidence-based simulation, and provides examples from real simulation practice in education, practice and research. Structured into three sections, the first delves into the different types of simulation and their applications within pharmacy curricula. From patient simulation to computer-based programs, this section highlights the diverse opportunities for experiential learning in pharmacy education. The next discusses the role of simulation in community and hospital pharmacy settings. This section emphasizes the importance of communication skills, patient care, and medication safety, demonstrating how simulation can contribute to improved practice and patient outcomes. The last section explores the use of simulation in drug development and research design. This section also examines the ethical considerations, data analysis, and reporting involved in simulation-based research. Comprehensive and practical, Comprehensive Healthcare Simulation: Pharmacy Education, Practice and Research is an essential resource for anyone interested in the expanding field of pharmacy simulation.

Download or read book Researching Health Together written by Emily B. Zimmerman and published by SAGE Publications. This book was released on 2020-03-02 with total page 497 pages. Available in PDF, EPUB and Kindle. Book excerpt: Researching Health Together brings together authors who have produced innovative methods or implemented projects focused on different stages of the research process, from question development to evaluation and translation. Editor Emily B. Zimmerman gathers exemplary new methods and projects into one place for the benefit of students designing research projects and proposals, those learning stakeholder-engaged methods, and those involved in implementing and funding stakeholder-engaged projects. Each chapter addresses: how engagement was conceptualized, organized, and implemented; how engagement was evaluated; impacts on processes and outcomes of the project; and facilitators, barriers, and lessons learned. The book serves as a core textbook for courses in community-based health research at the graduate level.