Statement on the Use of Human Subjects for Research (1969)

Organization: 

American Association for Intellectual and Developmental Disabilities (formerly American Association on Mental Deficiency and the American Association on Mental Retardation)

Source: 

CSEP Library

Date Approved: 

May 1969

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Statement on the Use of Human Subjects for Research

Whereas there is no single agency or group which is concerned with research in mental retardation which has expressed a position on the use of mentally retarded individuals in research, and Whereas, the American Association of Mental Deficiency specifically fosters research in mental retardation, now therefore. The American Association on Mental Deficiency endorses the following general principles regarding the use of individuals as research subjects:

1. Research in mental retardation must conform to the scientific legal, and moral principles which justify all research and should emerge out of sound theoretical base, or follow previously accepted research design

2. Research in mental retardation in which human subjects are used should be conducted only by scientifically qualified individuals in adequately equipped settings with the appropriate liaison or supervision. Where body integrity may be violated or when otherwise appropriate, medical liaison or supervision should be included.

3. Clinical research projects cannot be carried out legitimately unless the importance of the objective is proportionate to the risk to the subject. Such potential risks should be evaluated prior to work with subjects, with careful assessment of the inherent risks to subjects or others as compared with the benefits to individuals or society that will accrue from the research, and must be reflected in the research design.

4. Caution in exercise of research should not be limited to physical harm but should include unwarranted psychological impairment to the individual subject or his family.

5. Coercion of subjects or of families must be prohibited.

6. Compensation should be provided for the expense or unusual inconvenience caused by the research involvement of the subject and/or his family.

7. Ethical aspects of experimentation in mental retardation should be clearly stated in the research design to all stages in its development.

8. Consent of the subject or of the subject's legal guardian should be obtained for any research, if there is any risk or identity is to be revealed.

9. Experimentation should be planned in such a way as to avoid unnecessary pain, suffering, or inconvenience to the research subject and his family or guardians.

10. The researcher must assume responsibility for preparing an appropriate report of his work and for making this report available to colleagues or others in the scientific community.

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