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The Problem is Not Monsters: The FRANKENCON Panel on Science and Ethics
In November of 2019, the University of California Santa Cruz hosted a 3-day interdisciplinary conference to commemorate the 200th anniversary of the...
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Stakeholder Involvement in the Governance of Human Genome Editing in Japan
Genome editing is a technology that can accurately and efficiently modify the genome of organisms, including the human genome. Although human genome...
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Develo** a Framework for Self-regulatory Governance in Healthcare AI Research: Insights from South Korea
This paper elucidates and rationalizes the ethical governance system for healthcare AI research, as outlined in the ‘Research Ethics Guidelines for...
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Theorizing Participatory Research
“Participatory research” is an umbrella term for a wide variety of scientific research projects that include participation of members of the lay...
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Committees, Research Ethics Committees (See Research Ethics; Research Ethics Committees)
Research ethics committees have been established in a wide range of institutions where clinical research is conducted such as hospitals, research...
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Building Inclusive Ethical Cultures in STEM
Science, technology, engineering, and mathematics (STEM) fields are central to any educational system. The term started with the National Science...
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Gurus and Griots: Revisiting the research informed consent process in rural African contexts
BackgroundResearchers conducting community-based participatory action research (CBPAR) in highly collectivistic and socioeconomically disadvantaged...
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Introduction: What We Talk About When We Talk About the Ethics of Engaging Patient and Community Stakeholders in Health Research
Only somewhat recently has a specific literature emerged focused on the ethics of engaging patient and community stakeholders in health research....
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The ethical anatomy of payment for research participants
In contrast to most publications on the ethics of paying research subjects, which start by identifying and analyzing major ethical concerns raised by...
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Introducing the Downtown Eastside Community Research Ethics Workshop: Notes on a Process for Community Ethics Review
In this chapter, we share our process working together in Vancouver’s Downtown Eastside (DTES) neighborhood to develop a “community ethics” for...
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Research based on existing clinical data and biospecimens: a systematic study of patients’ opinions
BackgroundThe aim of the present survey was to investigate newly discharged hospital patients’ opinions on secondary use of their hospital data and...
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When to Suspend Bioethical Principles in Military Medicine for Operational Purposes: A Framework Approach
Occasionally in the military, operational situations arise where it is necessary to consider giving to military personnel not-yet-approved...
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Towards trust-based governance of health data research
Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time,...
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Data Decisions and Ethics: The Case of Stakeholder-Engaged Research
In this chapter, we will discuss three key ethical issues related to data collected in stakeholder-engaged research: (1) data ownership, (2) deciding...
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A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada
BackgroundThe highly sensitive nature of genomic and associated clinical data, coupled with the consent-related vulnerabilities of children together...
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A sco** review of ethics review processes during public health emergencies in Africa
BackgroundThe COVID-19 pandemic forced governments, multilateral public health organisations and research institutions to undertake research quickly...
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Philosophy in the Rainforest: Reflections on Integrating Philosophy and Fieldwork
Embedding research ethics education into apprenticeship-model undergraduate research experiences can contribute to creating, and maintaining, ethical...
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Dissemination of Research Results
In this chapter, we sum up ethical reasons for (and available tools to) comprehensively disseminate research results. This chapter is structured as...
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COVID-19 underscores the important role of Clinical Ethics Committees in Africa
BackgroundThe COVID-19 pandemic has magnified pre-existing challenges in healthcare in Africa. Long-standing health inequities, embedded in the...
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Raising concerns on questionable ethics approvals – a case study of 456 trials from the Institut Hospitalo-Universitaire Méditerranée Infection
BackgroundThe practice of clinical research is strictly regulated by law. During submission and review processes, compliance of such research with...
