Literature DB >> 22809073

"We want respect": adults with intellectual and developmental disabilities address respect in research.

Katherine Elizabeth McDonald1.   

Abstract

Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental disabilities on respect in research. Findings are consistent with disability rights' ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences.

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Year:  2012        PMID: 22809073     DOI: 10.1352/1944-7558-117.4.263

Source DB:  PubMed          Journal:  Am J Intellect Dev Disabil        ISSN: 1944-7558


  10 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.  Early Assessment and Support Alliance Connections: Community-Based Participatory Research to Develop a Peer-based Early Psychosis Web Resource with Young Adults.

Authors:  Dora M Raymaker; Tamara Sale; Mariam Rija; Nicholas Buekea; Nybelle Caruso; Ryan Melton; Natalie Cohrs; Veronica Gould; Christina Wall; Mirah Scharer
Journal:  Prog Community Health Partnersh       Date:  2020

3.  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

4.  Is It Worth It? Benefits in Research With Adults With Intellectual Disability.

Authors:  Katherine E McDonald; Nicole E Conroy; Robert S Olick
Journal:  Intellect Dev Disabil       Date:  2016-12

5.  A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

Authors:  Katherine E McDonald; Nicole E Conroy; Robert S Olick
Journal:  Disabil Health J       Date:  2017-12-13       Impact factor: 2.554

6.  Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement.

Authors:  Katherine E McDonald; Colleen Gibbons; Nicole Conroy; Robert S Olick
Journal:  J Appl Res Intellect Disabil       Date:  2021-09-24

7.  "You can't be cold and scientific": community views on ethical issues in intellectual disability research.

Authors:  Katherine E McDonald; Nicole M Schwartz; Colleen M Gibbons; Robert S Olick
Journal:  J Empir Res Hum Res Ethics       Date:  2015-03-13       Impact factor: 1.742

8.  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

Review 9.  Opening the door to university health research: recommendations for increasing accessibility for individuals with intellectual disability.

Authors:  Brittany M St John; Emily Hickey; Edward Kastern; Chad Russell; Tina Russell; Ashley Mathy; Brogan Peterson; Don Wigington; Casey Pellien; Allison Caudill; Libby Hladik; Karla K Ausderau
Journal:  Int J Equity Health       Date:  2022-09-10

10.  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
  10 in total

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