Two types of research studies actively recruit children with autism as participants: randomized experimental and clinical trial studies. Both of these types of studies require voluntary participation. The decision to participate in research studies is a personal decision. If you decide that you would like to or have your family member participate, some important points should be considered.
Questions and Answers about Participating in Research Studies
Q. Will I learn more about myself or my family member from participating in a study?
A. Be sure you understand the purpose of a study. Generally, research studies are conducted to collect group data, so you will probably not receive any information specific to you or your family member as an individual.
Q. How can I be sure that it is safe for me or my family member to participate in a study?
A. Inquire about the review process that the study had to undergo. Be sure that the research is being conducted in a controlled environment that is committed to the protection of participant rights. Generally, studies conducted at universities and medical institutions must receive approval from institutional review boards whose job it is to make sure that the research is ethical and safe. Private facilities are not always as closely regulated, so be sure to inquire about their systems of review and safeguards.
Q. How can I be sure that the study will not demand too much of my time?
A. Be sure you understand the requirements of participation. Find out how long the study is expected to last and how much time you will have to commit; if you will have to participate on a daily or weekly basis; how many hours per day are required, etc.
Q. If the study is using a randomized control design, how will I know if I or my family member is in the control or the treatment group?
A. Remember the discussion about randomized experimental studies in the previous section? You or your family member has a 50/50 chance of being assigned to either a treatment or a placebo group, and you will not be told of your group assignment until the conclusion of the study. For this reason, it is very important to be sure you understand whether or not you will be offered an opportunity to receive the treatment at the conclusion of the study if you or your family member was assigned to receive the placebo. Sometimes, researchers use a “cross-over” design, in which groups switch conditions after a period of time. If this is the case, you or your family member will be assured to receive the intervention. However, to keep you “blind” to your group assignment, you will not always know that the research is using a “cross-over” design in advance of the study.
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.
- 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.
Autism Central PA is committed to ethical and safe research. All research conducted by the Central Pennsylvania Regional Autism Partnership is reviewed and approved by the Penn State Hershey College of Medicine’s Institutional Review Board (IRB).
Material in this section is reproduced, with permission, from the Organization for Autism Research (OAR). An informative and comprehensive booklet entitled, A Parent’s Guide to Understanding Research, can be downloaded from their site by clicking the following link: www.researchautism.org/resources/reading/index.asp. To learn more about OAR please visit www.researchautism.org.
