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Autism, autonomy, and research

In M. Ariel Casio & Eric Racine (eds.), Research Involving Participants with Cognitive Disability and Difference: Ethics, Autonomy, Inclusion, and Innovation. Oxford University Press (2019)

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  1. Through the Community Looking Glass: Reevaluating the Ethical and Policy Implications of Research on Adolescent Risk and Psychopathology.Scyatta A. Wallace & Celia B. Fisher - 2000 - Ethics and Behavior 10 (2):99-118.
    Drawing on a conception of scientists and community members as partners in the construction of ethically responsible research practices, this article urges investigators to seek the perspectives of teenagers and parents in evaluating the personal and political costs and benefits of research on adolescent risk behaviors. Content analysis of focus group discussions involving over 100 parents and teenagers from diverse ethnic and socioeconomic backgrounds revealed community opinions regarding the scientific merit, social value, racial bias, and participant and group harms and (...)
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  • Phase I cancer trials: A collusion of misunderstanding.Matthew Miller - 2000 - Hastings Center Report 30 (4):34-43.
    Physician‐investigators face the daunting task of enrolling desperate patients into Phase I cancer trials that are not meant to be therapeutic. Patients doggedly regard the trials as therapeutic, and researchers tend to collaborate in their confusion by glossing the trials’ true purposes and noting the occasional benefit that subjects accidentally receive. The disparity between hope and fact must be redressed by degrees, from many angles at once.
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  • Principles of biomedical ethics.Tom L. Beauchamp - 1979 - New York: Oxford University Press. Edited by James F. Childress.
    Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...)
  • Mindblindness: An Essay on Autism and Theory of Mind.Simon Baron-Cohen - 1997 - MIT Press.
    In Mindblindness, Simon Baron-Cohen presents a model of the evolution and development of "mindreading." He argues that we mindread all the time, effortlessly, automatically, and mostly unconsciously. It is the natural way in which we interpret, predict, and participate in social behavior and communication. We ascribe mental states to people: states such as thoughts, desires, knowledge, and intentions. Building on many years of research, Baron-Cohen concludes that children with autism, suffer from "mindblindness" as a result of a selective impairment in (...)
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  • The Right to Participate in High-Risk Research.David Shaw - 2014 - The Lancet 38:1009 – 1011.
    Institutional review boards (IRBs) have a reputation for impeding research. This reputation is understandable inasmuch as many studies are poorly designed, exploit participants, or do not ask a relevant question , and it is entirely proper that IRBs should reject such proposals. However, IRBs also frequently reject or tamper with perfectly sound and relevant studies in the name of protecting participants from harm, in accordance with the widely accepted message that “clinical research is justified only when participants are protected from (...)
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  • Autism, the Social Thinking Curriculum, and moral courage.Kenneth A. Richman - 2015 - Power and Education 7 (3):355-360.
    Michelle Garcia Winner’s Social Thinking Curriculum is widely used by schools across the USA and has garnered attention internationally. The curriculum addresses social language and behavior deficits among those on the autism spectrum. Although many embrace this curriculum without reservation, the emphasis on social conformity, including avoiding behaviors that make others uncomfortable, merits scrutiny. Individuals who have difficulty understanding social cues and conventions can derive tremendous benefit from learning to fit in, for example, or learning what is likely to make (...)
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