Research Guidelines
Many parents ask how they can know what good research is and how to choose which research studies to participate in. Although there is a great variety in types of research and topics of research, there are some general guidelines that parents can follow to help make sure the research they participate in is more likely to treat participants appropriately, and provide a contribution to research. All of our research at the ADDL is approved by an ethics review board and strives to meet the needs of our participants, while making a contribution to the study of autism.
Ethics Review Board
An Ethics Review Board is a panel within a university, college, hospital, or other agency, which helps ensure that participants are treated appropriately. Research studies should be approved by an ethics review board, and this is often mentioned in the consent form. These boards approve research by reviewing the methods to be used and ensuring they adhere to ethical guidelines. These ethical guidelines include factors such as obtaining informed consent from all participants, protecting confidentiality, and ensuring appropriate treatment of participants.
Consent form
Researchers should ask you for either verbal or written consent before you participate in a research study. Verbal consent is used in the case that written consent is not possible or appropriate. The consent process involves the researchers telling you the purpose of the study, the process of the study, what is being asked of you, as well as your rights as a participant. In the case of experiments, researchers may not be able to tell you or your child all of the details of the study beforehand. This is because knowing exactly what is being examined, can sometimes affect how a participant responds. However, the researches should provide you with as much information as possible before the study so that you can make an informed decision about whether to participate.
Study Process
There are three basic elements to a research study: Obtaining consent, the study phase, and a debriefing. Consent is essential to protecting the rights of participants, and should always be obtained by the researchers prior to participating in a study. In this stage you will be informed of the purpose of the study, the details of what you or your child will be asked to do, and the rights of you and your child as participants in this study. The next stage is the study phase. Depending on the nature of the study this may involve completing a short task, or completing several measures or participating in several activities for the research study, over the course of months and years. A researcher should specify this when you initially provide consent for the study. However, sometimes researchers may decide to do a follow up study, at that time they may ask for your assistance again, and your consent will be sought again. Finally, a debriefing is done at the end of a study. This will tell you a bit more about the purpose of the study, and may include anticipated findings.
Right to Withdraw
Sometimes during the course of a study you may decide that you no longer with to continue participation. While all labs are very appreciative of your contribution, you have the right to withdraw from a study at any time. Researchers cannot require you to continue to participate in a study. However, if it is simply a case of having a few questions about the study or needing a short break or to reschedule, researchers will likely oblige if they can do so without invalidating the data collection process.
So, Which Studies?
Ultimately, the choice of what studies to participate in is an individual choice. Choose a study that works with your schedule and area of interest. There are many valuable research studies on autism that you may be able to contribute to, and the contribution of every individual helps. We hope to see you soon!