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  1. Engagement, Exploitation, and Human Intracranial Electrophysiology Research.Michelle T. Pham, Nader Pouratian & Ashley Feinsinger - 2022 - Neuroethics 15 (3):1-15.
    Motivated by exploitation concerns, we argue for the importance of participant engagement in basic human intracranial electrophysiology research. This research takes advantage of unique neurosurgical opportunities to better understand complex systems of the human brain, but it also exposes participants to additional risks without immediate therapeutic intent. We argue that understanding participant values and incorporating their perspectives into the research process may help determine whether and to what extent research practices and the resulting distributions of risks and benefits constitute exploitation (...)
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  • How do parents experience being asked to enter a child in a randomised controlled trial?Valerie Shilling & Bridget Young - 2009 - BMC Medical Ethics 10 (1):1-.
    BackgroundAs the number of randomised controlled trials of medicines for children increases, it becomes progressively more important to understand the experiences of parents who are asked to enrol their child in a trial. This paper presents a narrative review of research evidence on parents' experiences of trial recruitment focussing on qualitative research, which allows them to articulate their views in their own words.DiscussionParents want to do their best for their children, and socially and legally their role is to care for (...)
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  • Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada. [REVIEW]Anne Townsend & Susan M. Cox - 2013 - BMC Medical Ethics 14 (1):40.
    Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more (...)
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