Ethical Issues in Community and Patient Stakeholder–Engaged Health Research
Ethical Issues in Community and Patient Stakeholder–Engaged Health Research

Author: Emily E. Anderson

Publisher: Springer Nature

Published: 2023-10-31

Total Pages: 326

ISBN-13: 3031403797

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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.

The Ethics and Politics of Community Engagement in Global Health Research
The Ethics and Politics of Community Engagement in Global Health Research

Author: Lindsey Reynolds

Publisher: Routledge

Published: 2020-06-09

Total Pages: 201

ISBN-13: 1000057879

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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.

Human Challenge Studies in Endemic Settings
Human Challenge Studies in Endemic Settings

Author: Euzebiusz Jamrozik

Publisher: Springer Nature

Published: 2020

Total Pages: 145

ISBN-13: 3030414809

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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.

International Ethical Guidelines for Health-Related Research Involving Humans
International Ethical Guidelines for Health-Related Research Involving Humans

Author: Council for International Organizations of Medical Sciences (CIOMS)

Publisher: World Health Organization

Published: 2017-01-31

Total Pages: 0

ISBN-13: 9789290360889

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"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.

Ethics in Participatory Research for Health and Social Well-Being
Ethics in Participatory Research for Health and Social Well-Being

Author: Sarah Banks

Publisher: Routledge

Published: 2018-08-06

Total Pages: 248

ISBN-13: 1351605348

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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.

Ethical Challenges in Study Design and Informed Consent for Health Research in Resource-poor Settings
Ethical Challenges in Study Design and Informed Consent for Health Research in Resource-poor Settings

Author: Patricia A. Marshall

Publisher: World Health Organization

Published: 2007

Total Pages: 89

ISBN-13: 9241563389

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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.

Ethics and Research with Children
Ethics and Research with Children

Author: Eric Kodish

Publisher: Oxford University Press

Published: 2018-11-26

Total Pages: 408

ISBN-13: 0190671939

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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.

Sharing Research Data to Improve Public Health in Africa
Sharing Research Data to Improve Public Health in Africa

Author: National Academies of Sciences, Engineering, and Medicine

Publisher: National Academies Press

Published: 2015-09-18

Total Pages: 126

ISBN-13: 0309378125

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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.

The Oxford Handbook of Research Ethics
The Oxford Handbook of Research Ethics

Author: Ana S. Iltis

Publisher: Oxford University Press

Published: 2024

Total Pages: 937

ISBN-13: 0190947756

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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.