Confidentiality & Privacy
EPR staff make every effort possible to protect your privacy. All personal identifiers will be removed from your samples, and these will be coded with a personal identification number (PIN). The PIN will be linked to your information (name, sex, birth date, and contact information). The key to your samples will be kept in password-protected files and in facilities with multiple layers of security. Only the NIEHS investigator in charge of the registry, Dr. Shepherd H. Schurman, and other personnel who are directly involved in the registry, will have the key that connects your personal information to your samples and results. Test results will consist of DNA sequence data (changes in your genetic code) and will be stored in a password-protected, electronic database. NIEHS and UNC researchers and their collaborators will have access to your DNA and sample information, but only in their coded form.
Researchers who use your samples will not be able to identify you as your sample will only be identified by your PIN. Researchers will screen your samples to look for differences in your DNA sequence data (changes in your genetic code). Based on your genes or responses to EPR surveys, researchers might want to contact you, and other people in the registry, and ask you to participate in follow-up studies. Follow up studies are reviewed by multiple committees for scientific merit (scientific review) to ensure that all research subjects who participate in the study are protected. If their study is approved by these review committees, we will then release your name and contact information to these researchers so they may contact you about their follow-up study. Participation in follow-up studies is always completely voluntary.
No subjects will be identified by name in any report or publication resulting from this registry.
Information collected from the EPR is for research purposes only and will not be used for decisions concerning medical treatment and/or medical insurance payments.
Enrollment into the registry is expected to last indefinitely. There is no limit to the length of time we will keep your biological and environmental samples and information. We will keep them as long as they are useful, unless you request to be withdrawn from the registry and your samples destroyed or we close the Environmental Polymorphisms Registry.
Certificate of Confidentiality
To help us protect your privacy, we have obtained a Certificate of Confidentiality from the National Institutes of Health. With this Certificate, researchers cannot be forced to disclose information that may identify you, even by a court subpoena, in any federal, state, or local civil, criminal, administrative, legislative, or other proceeding. Researchers will use the Certificate to resist any demands for information that would identify you, except as explained below.
You should understand that a Certificate of Confidentiality does not prevent you or a member of your family from voluntarily releasing information about yourself or your involvement in this research. If an insurer, employer, or other person obtains your written consent to receive research information, then the researchers may not use the Certificate to withhold that information. There are no conditions under which the researchers will make voluntary disclosures.
Last Reviewed: November 27, 2017