Adapting standards: ethical oversight of participant-led health research
E Vayena, J Tasioulas - PLoS medicine, 2013 - journals.plos.org
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Approaches to governance of participant-led research: a qualitative case study
Objectives Participant-led research (PLR) is a rapidly developing form of citizen science in
which individuals can create personal and generalisable knowledge. Although PLR lacks a …
which individuals can create personal and generalisable knowledge. Although PLR lacks a …
Stakeholder-driven, consensus development methods to design an ethical framework and guidelines for engaged research
G Corbie-Smith, M Wynn, A Richmond, S Rennie… - PLoS …, 2018 - journals.plos.org
Increasingly, researchers seek to engage communities, patients, and stakeholders as
partners in the process and products of health research. However, there is no existing …
partners in the process and products of health research. However, there is no existing …
Research led by participants: a new social contract for a new kind of research
E Vayena, R Brownsword, SJ Edwards… - Journal of Medical …, 2016 - jme.bmj.com
In recent years, there have been prominent calls for a new social contract that accords a
more central role to citizens in health research. Typically, this has been understood as …
more central role to citizens in health research. Typically, this has been understood as …
A field training guide for human subjects research ethics
A Field Training Guide for Human Subjects Research Ethics | PLOS Medicine Skip to main
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Empirically supported ethical research practice: The costs and benefits of research from the participants' view
E Newman, T Willard, R Sinclair… - Accountability in …, 2001 - Taylor & Francis
Researchers and institutional review boards are routinely called upon to evaluate the cost‐
benefit status of proposed research protocols that involve human participants. Often these …
benefit status of proposed research protocols that involve human participants. Often these …
The ethics of public and service user involvement in health research: The need for participatory reflection on everyday ethical issues
In their contribution, Wiggins and Wilbanks (2019) discuss the rise of citizen science and
elaborate on several ethical issues that go beyond standard approaches in research ethics …
elaborate on several ethical issues that go beyond standard approaches in research ethics …
Bringing the common rule into the 21st century
KL Hudson, FS Collins - New England Journal of Medicine, 2015 - Mass Medical Soc
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National Standards for Public Involvement in Research: missing the forest for the trees
Biomedical research funding bodies across Europe and North America increasingly
encourage—and, in some cases, require—investigators to involve members of the public in …
encourage—and, in some cases, require—investigators to involve members of the public in …
Thought leader perspectives on benefits and harms in precision medicine research
LM Beskow, CM Hammack, KM Brelsford - PLoS One, 2018 - journals.plos.org
Precision medicine research is underway to identify targeted approaches to improving
health and preventing disease. However, such endeavors raise significant privacy and …
health and preventing disease. However, such endeavors raise significant privacy and …