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Target Article

How are PCORI-funded researchers engaging patients in research and what are the ethical implications?
Lauren E. Ellis MA, PhD & Nancy E. Kass

Background: Despite growing interest in patient engagement in research, there are few empirical investigations of the nature of engagement and its effects. This information is important, not only to inform practical decisions researchers and funders must make, but also to inform discussion of the ethical implications of engaging patients, which has received little attention to date. Methods: The a...

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Better to know than to imagine: Including children in their health care
Tenzin Wangmo, Eva De Clercq, Katharina M. Ruhe, Maja Beck-Popovic, Johannes Rischewski, Regula Angst, Marc Ansari & Bernice S. Elger

Background: This article describes the overall attitudes of children, their parents, and attending physicians toward including or excluding pediatric patients in medical communication and health care decision-making processes. Methods: Fifty-two interviews were carried out with pediatric patients (n = 17), their parents (n = 19), and attending oncologists (n = 16) in eight Swiss pediatric oncology...

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Decision making in pediatric oncology: Views of parents and physicians in two European countries
Domnita O. Badarau, Katharina Ruhe, Thomas Kühne, Eva De Clercq, Anca Colita, Bernice S. Elger & Tenzin Wangmo

Background: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options. Methods: This qualitative interview study explored decision-making processes for children with cancer at different stages in their treatment in Switzerland and Romania. Results: T...

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When are primary care physicians untruthful with patients? A qualitative study
Stephanie R. Morain, Lisa I. Iezzoni, Michelle M. Mello, Elyse R. Park, Joshua P. Metlay, Gabrielle Horner & Eric G. Campbell

Background: Notwithstanding near-universal agreement on the theoretical importance of truthfulness, empirical research has documented gaps between ethical norms and physician behaviors. Although prior research has explored situations in which physicians may not be truthful with patients, it has focused on contexts within specialty practice. In this article, we report on a qualitative study of trut...

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Online public reactions to fMRI communication with patients with disorders of consciousness: Quality of life, end-of-life decision making, and concerns with misdiagnosis
Jennifer A. Chandler, Jeffrey A. Sun & Eric Racine

Background: Recently, the news media have reported on the discovery of covert awareness and the establishment of limited communication using a functional magnetic resonance imaging (fMRI) neuroimaging technique with several brain-injured patients thought to have been in a vegetative state. This discovery has raised many ethical, legal, and social questions related to quality of life, end-of-life d...

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Problematic protocols: An overview of medical research protocols not approved by the LUMC medical ethics review committee
Derek Gideon Tersmette & Dirk Peter Engberts

Background: The Committee for Medical Ethics (CME) of Leiden University Medical Center (LUMC) was established as the first medical ethics reviewing committee (MREC) in the Netherlands. In the period 2000–2010 the CME received 2,162 protocols for review. Some of these protocols were never approved. Until now, there has existed neither an overview of these failed protocols nor an overview of the r...

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Morals or markets? Regulating assisted reproductive technologies as morality or economic policies in the states
Erin Heidt-Forsythe

Background: The availability of assisted reproductive technologies (ARTs) in the medical marketplace complicates our understanding of reproductive public policy in the United States. Political debates over ARTs often are based on fundamental moral principles of life, reproduction, and kinship, similar to other reproductive policies in the United States. However, ARTs are an important moneymaking p...

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