Physical risks associated with participating in the Registry are related only to obtaining a blood sample. While there are no physical risks associated with gathering medical and family history information, some of this information may be uncomfortable for you / your child to discuss. If this occurs at any time, the interview may be stopped at the individual's request.
This research involves the possible identification of genetic information about you / your child and your genetically related family members. There are social, economic, and psychological implications that may be associated with the gathering of genetic information.
Learning about the presence of an abnormal gene or about differences in genetic make-up between family members can be stressful for a family. The finding of an abnormal gene may change a family's perception of their risk to have further or future cardiac disorders.
There is a possible but unproved risk of genetic discrimination. We will take every precaution to protect you / your child's privacy. Information contained in the Registry is stored in secured locations, kept separate from an individual's medical record, and made available only to qualified researchers. Additional information is available regarding the issue of genetic discrimination on the National Human Genome Research Institute website.
Instances of non-paternity or adoption may be detected during genetic analysis. This information will be kept in the strictest of confidence and will not be divulged to anyone.
