An article: "We Want Respect": Adults with Intellectual and Developmental Disabilities Address Respect in Research
In an article entitled "We Want Respect": Adults with Intellectual and Developmental Disabilities Address Respect in Research (available here), she examines the opinions of people with an intellectual deficiency on the respect of their rights and their person in research.
The author points out the fact that ethical principles protecting these people can also limit their involvement in the research concerning them. These people also only rarely have the opportunity to express themselves on the matter.
The article presents a synthetic review of previous works dealing with the implication of people with an intellectual deficiency in research and provides numerous references. The author also points out the fact that ethical committees do not always take into account the recommandations emanating from research and sometimes adopt protective measures which do not respect these people’s dignity.
Only few studies have focused on the opinion of people with intellectual deficiencies themselves concerning their involvement in research. The author interviewed 16 adults with intellectual deficiencies in order to establish how they want to be treated by researchers and what researchers should do to respect them in their interactions. A group study was also conducted afterwards.
The methodology of the study was elaborated in collaboration with two people with intellectual deficiencies who participated in the creation of the documents for recruitment, consent, questionnaires and communication guides. The article however does not provide those documents. The author reports on what the people with intellectual deficiencies say: how they felt when participating in research, their interactions with researchers, their desire to be involved in research... An important result is also the sensitivity of people with intellectual deficiencies to the way researchers interact with them and their desire to get feedback on their participation and on the knowledge produced.
McDonald, K. E. (2012). “We Want Respect”: Adults with Intellectual and Developmental Disabilities Address Respect in Research. American journal on intellectual and developmental disabilities, 117(4), 263-274.