Your identity is kept private. The information in this study is confidential. All records are kept under lock and key. Identifying information is removed from computer files, which are password protected. We will never use mothers' names, fathers' names, or childrens' names in any report or publication. Answers to interview questions and results of genetic tests are not seen by or given to anyone outside the study, including insurance companies or other government agencies, even if requested by a court of law.
What is informed consent?
When the interviewer calls you to begin the telephone interview, she will give you more details about the study, including potential risks and benefits of participating. She will ask you to provide verbal consent (permission) to use your answers in our study to understand the causes of birth defects. When you have completed the interview, you will receive a cheek cell collection kit in the mail that will contain a written consent form specific to the collection of DNA samples. This form will explain more details about providing DNA samples, including the potential risks and benefits of participating. The signed consent form will need to be returned with your cheek cell samples. You may also call us with any questions you may have about participating in the study.
What will you do with my genetic information?
The genetic information we collect from your DNA samples will be used only to study birth defects and for no other reason. To protect your confidentiality, no names or other personal information will be attached to the samples. Genetic information may be shared with other participating sites and other researchers when and if it has been approved by research review committees. The shared data will not contain any information that could identify any individual.