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ERIC Number: EJ753023
Record Type: Journal
Publication Date: 2006-Sep
Pages: 3
Abstractor: ERIC
ISBN: N/A
ISSN: ISSN-1366-8250
EISSN: N/A
Reactions to "Ethical Challenges and Complexities of Including People with Intellectual Disability as Participants in Research" by Dr Teresa Iacono
Aman, Michael G.; Handen, Benjamin
Journal of Intellectual and Developmental Disability, v31 n3 p180-182 Sep 2006
The authors' reaction to Dr Teresa Iacono's article "Ethical challenges and complexities of including people with intellectual disability as participants in research" is presented. Among other things, they find that Dr Iacono has done an outstanding job of describing creative solutions for obtaining appropriate informed consent from people with intellectual disability (ID). Dr Iacono also underscores an important point that is often overlooked in ethics discussions: namely, that there is often an implicit assumption that any risk associated with research is a bad thing and is to be avoided at all costs. However, advocates do not have the right to take opportunities to participate in research away from individuals with ID. Their role is to ensure that risks are well understood and that consent is truly voluntary. In conclusion, they suggest consideration of the following steps: (1) some thought should be given to a minimum representation of "active researchers" on such committees (there is no place for potential bias by non-researchers); (2) appropriate credit should be given to people who serve on IRBs (by reduced teaching/clinical load, modest administrative salary increases, or other approaches) to offset the very significant workload involved; and (3) periodic evaluation of IRB performance by "investigators" should be required (i.e., evaluation of conduct should not be a one-way street).
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Publication Type: Journal Articles; Opinion Papers
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A