Each candidate gene is thoroughly studied to determine if it is the gene causing the condition. As you can see, only individuals with the condition and their families have the genetic information which is required to find the gene causing that condition. And each participant makes a valuable contribution to this phase of genetic research. Participation in a genetic research project is always voluntary and may be somewhat time consuming. If expenses are incurred, the researchers should either pay the expense or make a reimbursement.
Information generated during the study is protected to ensure privacy for the participants.
The specific details concerning these matters should be provided to you by the researcher. If your family has a genetic condition, participating in genetic research may provide critical data which will identify the gene causing the condition. Once the gene is identified, clinical testing may be developed which could identify the genetic condition in others. With additional research, there will be better understanding of the gene and its function. It is our hope that this will lead to the development of new treatments.