How do I know my DNA is safe (i.e. from the government or insurance companies)?

We will not share any information about you with an insurance company. However, if you discuss your participation in this study with your doctor, and he or she records it in your medical record, it is possible that an insurance company may access the information as part of a medical record review. Some insurance companies might wrongly assume that your participation in this study is an indication that you are at higher risk for a genetic condition, and this could hurt your access to health or other insurance. Therefore, if you are asked, this should not be reported as genetic testing. Participation in this study is not genetic testing. In addition to the confidentiality protections described in this consent form, a Federal law called the Genetic Information Nondiscrimination Act (GINA) generally makes it illegal for health insurance companies, group health plans, and most employers to discriminate against you based on your genetic information.

What about confidentiality?

The confidentiality of the DNA sample you provide will be closely guarded; samples are identified by number only so the people who have the DNA have no way of identifying whom it came from. Your DNA sample will be stored at a laboratory that is part of the University of California, San Francisco.

If you participate in this study, your identity will be kept confidential. The genetic samples and cell line could be shared with other investigators as part of the effort to identify genes that predispose individuals to the childhood and adolescent psychiatric disorders. However, any such release of clinical information will not involve release of names or other identifying information. No information that identifies you will be shared, so that only the research staff here and the director of this research project will know your identity.

What if someone wants my DNA for a criminal/paternity case?

The investigators have a Confidentiality Certificate from the Department of Health and Human Services (DHHS). With this Certificate, the investigators cannot be forced (for example by court subpoena) to disclose information that may identify you in any federal, state, or local civil, criminal, administrative, legislative, or other proceedings. Your saliva sample and the genetic information obtained from it will not be available to you or your relatives for genetic counseling. If you are interested in genetic counseling, you will be given information about where you can receive such counseling and a blood sample may be required at that time. Genetic information about you and your child will be released only if a genetic counselor confirms that one of you is deceased or cannot be found, and that the information is essential for clinical counseling.

What exactly are you looking for?

We are only looking at the part of your DNA that might be a predisposition to depression.

If you would like to know more about our study you can discuss this with the principal investigator of this study or you can go to the following website here. If you change your mind about us having your DNA in the future, you can tell us to take it out of the study and destroy it. To have it removed please contact Dr. Myrna Weissman at (212) 543-5880 at the New York State Psychiatric Institute. You will be asked to submit the request for destruction of the sample in writing. You will receive written confirmation when the sample has been destroyed.