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Do people with intellectual disability require special human subjects research protections? The interplay of history, ethics, and policy

Authors

  • Chris Feudtner,

    1. Department of Medical Ethics and Policy Lab, The Children's Hospital of Philadelphia North, University of Pennsylvania, Philadelphia, Pennsylvania
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  • Jeffrey P. Brosco

    Corresponding author
    1. Department of Medical Ethics and Policy Lab, The Children's Hospital of Philadelphia North, University of Pennsylvania, Philadelphia, Pennsylvania
    • Mailman Center for Child Development, Department of Pediatrics, University of Miami, Miami, FL 33101-6820
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Abstract

People with intellectual disability (ID) have a long history of discrimination and stigmatization, and a more recent history of pride and self-advocacy. The early history suggests that people with ID are a vulnerable population and deserve special research protections as do some other groups; the disability rights movement of the late 20th century aligns people with ID more closely with the principle of autonomy that has guided clinical and research ethics for the last 40 years. In examining the history of people with ID and the prevailing framework of human subjects research protections in the United States, we conclude that people with ID do not require special protection in human subjects research. The protections that have already been put in place for all individuals, if conscientiously and effectively implemented, achieve the right balance between safeguarding the interest of human research subjects and empowering individuals who choose to do so to participate in research. © 2012 Wiley Periodicals, Inc. Dev Disabil Res Rev 2011; 17:52–56.

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