Literature DB >> 18584318

How the powerful decide: access to research participation by those at the margins.

Katherine E McDonald1, Christopher B Keys.   

Abstract

How do those in power decide to include and exclude those at the margins from community life? We used simulated review of research vignettes to examine how researchers and members of Institutional Review Boards make decisions concerning the research participation of adults with and without intellectual disabilities. Results indicate that decision-makers are influenced by the disability status of the sample, characteristics of the research in which they are engaged, and their attitudes toward the research participation of adults with intellectual disabilities as well as their own relationship to the research process. For example, decision-makers may create situations that limit the self-determination of adults with intellectual disabilities and adults without disabilities within the research context, particularly when the research poses some risk of harm to participants. Implications for theory, action and research are explored.

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Mesh:

Year:  2008        PMID: 18584318     DOI: 10.1007/s10464-008-9192-x

Source DB:  PubMed          Journal:  Am J Community Psychol        ISSN: 0091-0562


  8 in total

1.  Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.

Authors:  Katherine E McDonald; Nicole E Conroy; Carolyn I Kim; Emily J LoBraico; Ellis M Prather; Robert S Olick
Journal:  J Empir Res Hum Res Ethics       Date:  2016-07-31       Impact factor: 1.742

2.  What's the Harm? Harms in Research With Adults With Intellectual Disability.

Authors:  Katherine E McDonald; Nicole E Conroy; Robert S Olick; The Project Ethics Expert Panel
Journal:  Am J Intellect Dev Disabil       Date:  2017-01

Review 3.  Ethics in pharmacologic research in the child with a disability.

Authors:  Peter Rumney; James A Anderson; Stephen E Ryan
Journal:  Paediatr Drugs       Date:  2015-02       Impact factor: 3.022

4.  In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research.

Authors:  Maya Sabatello; Yuan Zhang; Ying Chen; Paul S Appelbaum
Journal:  Public Health Genomics       Date:  2020-04-15       Impact factor: 2.000

5.  The Convention on the Rights of Persons with Disabilities: a foundation for ethical disability and health research in developing countries.

Authors:  Jo Durham; Claire E Brolan; Bryan Mukandi
Journal:  Am J Public Health       Date:  2014-09-11       Impact factor: 9.308

6.  Assessing Understanding and Obtaining Consent from Adults with Intellectual Disabilities for a Health Promotion Study.

Authors:  Willi Horner-Johnson; Danielle Bailey
Journal:  J Policy Pract Intellect Disabil       Date:  2013-09

7.  Paradigm shifts in disability and health: toward more ethical public health research.

Authors:  Katherine E McDonald; Dora M Raymaker
Journal:  Am J Public Health       Date:  2013-10-17       Impact factor: 9.308

8.  Development of the AASPIRE Web Accessibility Guidelines for Autistic Web Users.

Authors:  Dora M Raymaker; Steven K Kapp; Katherine E McDonald; Michael Weiner; Elesia Ashkenazy; Christina Nicolaidis
Journal:  Autism Adulthood       Date:  2019-04-13
  8 in total

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