Literature DB >> 24134380

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

Katherine E McDonald1, Dora M Raymaker.   

Abstract

Disability is often considered a health outcome disproportionately experienced by minority groups. It is also possible to view people with disabilities as a minority group that itself experiences health disparities. Calls to reduce these disparities necessitate the inclusion of people with developmental disabilities in research, although resulting ethical issues can thwart scientific progress. Using disability rights principles can help address ethical challenges and promote safe, respectful public health research. Examples include applying human rights frameworks, providing accommodations, attending to power, countering legacies of deficits-based models of disability, and transforming access to science more broadly. Collectively, these strategies can encourage broader engagement in safe, respectful, inclusive public health research aimed at promoting the health and well-being of people with developmental disabilities.

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Year:  2013        PMID: 24134380      PMCID: PMC3828957          DOI: 10.2105/AJPH.2013.301286

Source DB:  PubMed          Journal:  Am J Public Health        ISSN: 0090-0036            Impact factor:   9.308


  38 in total

Review 1.  Ethical challenges in the conduct of research involving persons with mental retardation.

Authors:  R I Freedman
Journal:  Ment Retard       Date:  2001-04

2.  Disability rights critique of prenatal genetic testing: reflections and recommendations.

Authors:  Erik Parens; Adrienne Asch
Journal:  Ment Retard Dev Disabil Res Rev       Date:  2003

3.  Gatekeepers of science: attitudes toward the research participation of adults with intellectual disability.

Authors:  Katherine E McDonald; Christopher B Keys; David B Henry
Journal:  Am J Ment Retard       Date:  2008-11

4.  Development of an accessible Audio Computer-Assisted Self-Interview (A-CASI) to screen for abuse and provide safety strategies for women with disabilities.

Authors:  Mary Oschwald; Paula Renker; Rosemary B Hughes; Anne Arthur; Laurie E Powers; Mary Ann Curry
Journal:  J Interpers Violence       Date:  2008-05-30

Review 5.  Review of community-based research: assessing partnership approaches to improve public health.

Authors:  B A Israel; A J Schulz; E A Parker; A B Becker
Journal:  Annu Rev Public Health       Date:  1998       Impact factor: 21.981

Review 6.  The ethical basis of psychiatric research: conceptual issues and empirical findings.

Authors:  L W Roberts
Journal:  Compr Psychiatry       Date:  1998 May-Jun       Impact factor: 3.735

7.  Leading major congenital malformations among minority groups in the United States, 1981-1986.

Authors:  G F Chávez; J F Cordero; J E Becerra
Journal:  MMWR CDC Surveill Summ       Date:  1988-07

8.  Ethical aspects of dementia research: informed consent and proxy consent.

Authors:  G A Sachs; C B Stocking; R Stern; D M Cox; G Hougham; R S Sachs
Journal:  Clin Res       Date:  1994-10

9.  'You need to let your voice be heard': research participants' views on research.

Authors:  K E McDonald; C A Kidney; M Patka
Journal:  J Intellect Disabil Res       Date:  2012-02-01

10.  Informed consent by proxy. An issue in research with elderly patients.

Authors:  J W Warren; J Sobal; J H Tenney; J M Hoopes; D Damron; S Levenson; B R DeForge; H L Muncie
Journal:  N Engl J Med       Date:  1986-10-30       Impact factor: 91.245

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  15 in total

1.  The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants.

Authors:  Christina Nicolaidis; Dora Raymaker; Steven K Kapp; Amelia Baggs; E Ashkenazy; Katherine McDonald; Michael Weiner; Joelle Maslak; Morrigan Hunter; Andrea Joyce
Journal:  Autism       Date:  2019-04-03

2.  Usefulness and Importance of Informatics Solution in Evaluating Disability - Starting Point for Physical and Rehabilitation Medicine - Draft Application.

Authors:  Nida-Alexandra Cojan-Carlea; Cristian Marius Cojocaru; Adrian Bighea; Florina Popa; Mihai Berteanu
Journal:  Maedica (Buchar)       Date:  2015-06

3.  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

4.  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

5.  Reflections of a community-based participatory researcher from the intersection of disability advocacy, engineering, and the academy.

Authors:  Dora M Raymaker
Journal:  Action Res (Lond)       Date:  2016-03-14

6.  Intersections of Critical Systems Thinking and Community Based Participatory Research: A Learning Organization Example with the Autistic Community.

Authors:  Dora M Raymaker
Journal:  Syst Pract Action Res       Date:  2016-04-04

7.  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

8.  "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

9.  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.  A survey study of the attitudes and experiences of adults with intellectual disability regarding participation in research.

Authors:  N E Conroy; K E McDonald; R S Olick
Journal:  J Intellect Disabil Res       Date:  2021-08-09
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