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

Journal of Empirical Research on Human Research Ethics : JERHRE
Katherine E McDonaldRobert S Olick

Abstract

Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability. We found substantial support for their inclusion, particularly given the possibility of benefits to adults with intellectual disability, researchers, and society. We also found concerns for potential harm and differing ideas on how to promote safety. Our findings emphasize the importance of their inclusion in research, and the need for policies and practices that promote respect and safety.

References

Mar 1, 1991·The American Journal of Occupational Therapy : Official Publication of the American Occupational Therapy Association·L Krefting
Feb 15, 2003·Mental Retardation and Developmental Disabilities Research Reviews·Celia B Fisher
Feb 22, 2005·Current Opinion in Psychiatry·J Clegg
Jan 26, 2006·Mental Retardation and Developmental Disabilities Research Reviews·Gloria L KrahnAnne Turner
Sep 7, 2006·Journal of Intellectual & Developmental Disability·Teresa Iacono
Jan 9, 2009·American Journal of Mental Retardation : AJMR·Katherine E McDonaldDavid B Henry
Apr 5, 2011·Journal of Empirical Research on Human Research Ethics : JERHRE·Jonathan D RubrightScott Y H Kim
Feb 2, 2012·Journal of Intellectual Disability Research : JIDR·K E McDonaldM Patka
Jul 20, 2012·American Journal on Intellectual and Developmental Disabilities·Katherine Elizabeth McDonald
Oct 31, 2012·Journal of Intellectual Disability Research : JIDR·T Iacono, R Carling-Jenkins
Sep 5, 2013·Journal of Intellectual Disability Research : JIDR·M A FeldmanP Burnham-Riosa
Oct 19, 2013·American Journal of Public Health·Katherine E McDonald, Dora M Raymaker
Jan 25, 2014·Disability and Health Journal·Nina A Kohn, Jeremy A Blumenthal
Aug 8, 2014·Journal of Intellectual Disabilities : JOID·Ruth Northway
Feb 4, 2014·Journal of Law and the Biosciences·Rebecca Dresser

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Citations

Jan 18, 2017·American Journal on Intellectual and Developmental Disabilities·Katherine E McDonaldThe Project Ethics Expert Panel
Nov 29, 2016·Intellectual and Developmental Disabilities·Katherine E McDonaldUNKNOWN Project ETHICS Expert Panel
Jun 17, 2016·Journal of Empirical Research on Human Research Ethics : JERHRE·Katherine E McDonaldRobert S Olick
Mar 14, 2019·Qualitative Health Research·Jennifer R BanasDavid E Victorson
Jul 17, 2018·Journal of Applied Research in Intellectual Disabilities : JARID·Annabel FolchMaria José Cortés
Mar 23, 2019·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Maya SabatelloPaul S Appelbaum
Oct 2, 2019·Frontiers in Psychology·Ju-Young Park, Eun-Young Park
Apr 23, 2020·International Journal of Environmental Research and Public Health·Rachael LaingRohan L Rasiah
Jan 3, 2018·Disability and Health Journal·Katherine E McDonaldUNKNOWN Project ETHICS Expert Panel
Aug 10, 2021·Journal of Intellectual Disability Research : JIDR·N E ConroyUNKNOWN Project ETHICS Expert Panel Members

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