I am teaching a class on the ethics of conducting research that includes individuals with intellectual and developmental disabilities as study participants.
I have never participated in such a study and am interested in obtaining both the study protocol and informed consent documents to use as a discussion point for the class.
I have tried looking on line and have found literature presenting the results of study. I tried reaching out to the authors of papers to see if they would be willing to talk to me and supply me with a copy of their study protocol and informed consent form but have not received any replies.
The class is scheduled for Tuesday, 12 November 2019. I would appreciate any assistance that members can provide.
Thank you in advance for your assistance and support.
Pam Manning
Pamela Manning I have conducted research with my daughter for many years. Sofie Daae Kversøy has a profile here on ResearchGate. Sofie has a severe intellectual disability. We have conducted research together with me as a facilitator and Sofie as the explorer and developer. You can see pour first joint article here: http://www.iaclp.org/yahoo_site_admin/assets/docs/5_Kjartan.13104701.pdf
In connection with this research I made a thorough inquiry with NSD - Norwegian Centre for Research Data. My challenge was the ethics challenge in research like this. Special challenges: I am her father, she has a severe intellectual disability, she was only 12 years old at the time of writing the article, I wanted her presented with full name since she had done most of the actual exploration and development and I felt she needed credit for being an important co-researcher in the project. Sofie started participating in this project at age 5.
Parents can give consent to children with intellectual disabilities participating in research. With people with ID over age 18 you need to find out if the person with intellectual disability is legally allowed to give consent themselves or if they have a person that needs to be asked to help them with this. People with intellectual disabilities should have the same possibilities to participate in research and be co-researchers.
From an ethics perspective (I am a philosopher with special knowledge in ethics): I think the intentions are important. Do you do this research with the intent that it should be beneficial for the people involved? Is there strong transparency in the project? Is the project understandable (recognizable) for the people involved? The value of knowledge creation can be understood as (Kurt Lewin): Research that gives the participants a better mastering of the situation they are in and research that also gives the participants a better mastering of the relations they are in.
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