Autism research studies, especially in the area of applied research, are dependent on participation by individuals with an ASD diagnosis. Parents of children with autism often seek to include their child in ongoing research studies in part to increase our understanding of autism and for the potential benefit to the child from receiving the intervention being used in the research study.
Researchers also actively recruit children with autism and family members to be participants in research studies. Participation in a research study is a decision that is both voluntary and personal. If you decide that you would like to have your child, family members, or yourself participate in a research study, please consider the following points and questions.
Ethical Considerations in Research with Human Participants
The American Medical Association and the American Psychological Association have strict codes of ethics that all researchers must follow when conducting research with human participants. As a participant, you should be informed about all aspects of the research, including information about:
- Potential risks of participation: You should be informed of any potential risks to you or your child as a consequence of participating in a study.
- Potential benefits of participation: You should be informed of the benefits of participation.
- Assurance of confidentiality: You should be informed of how researchers are going to ensure the confidentiality of you and your child’s identity.
- The right to withdraw from the research at any time: Your participation is voluntary and you have the right to withdraw from the study at any time with no penalty.
- Informed consent: Researchers must obtain your written informed consent for participation and this consent must be provided freely and without coercion (i.e., “If you don’t agree, we can no longer work with your child.”).
If you are not informed of any of these aspects of the research, do not participate in the study.
Questions to Answer before Participating in Research Studies
Assuming that you have been fully informed and that the human subjects’ protection requirements have been approved by an institutional review board (IRB), please ask yourselves the following questions and consider OAR’s accompanying advice before enrolling your child, other family member or yourself in any study.