de-identified data (a controlled access database). Neither type of database will contain information that is traditionally used to identify you, such as your name, address, medical record number, telephone number or social security number. However, people may develop ways in the future that would allow someone to link your genetic or medical information in our databases back to you. For example, someone could compare information in our databases with information from you (or a relative) in another database and be able to identify you (or a relative). Because the DNA sequence of each individual is unique (with the exception of identical twins), there is a very remote possibility that if a complete sequence determination of your DNA were publicly disclosed, it could be used by a researcher to determine your identity. It is also possible that there could be violations to the security of the computer systems used to share the codes linking your genetic and medical information to you. Patterns of genetic variation also can be used by law enforcement agencies to identify a person or his/her relatives. Your privacy is very important to us and we will use many safety measures to protect your privacy. However, in of all the safety measures that we will use, we cannot guarantee that your identity will never become known. Although your genetic information is unique to you, you do share some genetic information with your children, parents, brothers, sisters and other relatives. Consequently, it may be possible that researchers looking at your genetic information could guess your identity based on other genetic information that they might know about your relatives. Similarly, it may be possible that genetic information from you could be used to help identify your relatives. There may be other privacy risks that we have not foreseen. While we believe the risks to you and your family are very low, we are unable to tell you exactly what all the risks are. Planned Follow-up: [Explain the follow-up procedures. For example: We would like to keep track of your medical condition. We would like to do this by [e.g., calling you on the telephone once a year to see how you are doing]. Keeping in touch with you and checking your condition helps us look at the long-term effects of the research study.].
de-identified data (a controlled access database). Neither type of database will contain information that is traditionally used to identify you, such as your name, address, medical record number, telephone number or social security number. However, people may develop ways in the future that would allow someone to link your genetic or medical information in our databases back to you. For example, someone could compare information in our databases with information from you (or a relative) in another database and be able to identify you (or a relative). Because the DNA sequence of each individual is unique (with the exception of identical twins), there is a very remote possibility that if a complete sequence determination of your DNA were publicly disclosed, it could be used by a researcher to determine your identity. It is also possible that there could be violations to the security of the computer systems used to share the codes linking your genetic and medical information to you. Patterns of genetic variation also can be used by law enforcement agencies to identify a person or his/her relatives. Your privacy is very important to us and we will use many safety measures to protect your privacy. However, in of all the safety measures that we will use, we cannot guarantee that your identity will never become known. Although your genetic information is unique to you, you do share some genetic information with your children, parents, brothers, sisters and other relatives. Consequently, it may be possible that researchers looking at your genetic information could guess your identity based on other genetic information that they might know about your relatives. Similarly, it may be possible that genetic information from you could be used to help identify your relatives. There may be other privacy risks that we have not foreseen. While we believe the risks to you and your family are very low, we are unable to tell you exactly what all the risks are. Planned Follow-up: [Explain the follow-up procedures. For example: We would like to keep track of your medical condition. We would like to do this by [e.g., calling you on the telephone once a year to see how you are doing]. Keeping in touch with you and checking your condition helps us look at the long-term effects of the research study.].
Biomedical_Consent.docx