Confidentiality & Privacy

Study personnel for the EPR will make every effort to protect your privacy. All identifiers will be removed from your blood specimen and this will be encrypted with a personal identification number. The encryption system will be used on your blood and DNA samples and test results throughout the course of the study. Only the NIEHS investigators in charge of the registry, Drs. Perry Blackshear and Patricia Chulada, 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 study results, but only in their secret encrypted form. Based on your study results, these scientists may want to contact you and ask you to participate in follow-up studies. These scientists will only be given your name and contact information (along with other people in the registry who have the same DNA differences) if their study is approved by a scientific review panel and the Institutional Review Board of NIEHS or UNC.

No subjects will be identified in any report or publication resulting from this registry. Information collected in the EPR is for research purposes only and will not be used for decisions concerning medical treatment and/or medical insurance payments. DNA samples, the encryption key, and all accompanying personal identification and contact information will be kept for no more than 25 years and will then be discarded. During this time, these samples are the property of the National Institute of Environmental Health Sciences.

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Certificate of Confidentiality

To provide the maximum protection of your privacy that is possible, we have obtained a Certificate of Confidentiality from the National Institutes of Health. With this Certificate, the 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 proceedings. The researchers will use the Certificate to resist any demands for information that would identify you, except as explained below. The Certificate cannot be used to resist a demand for information from personnel of the United States Government that is used for auditing or evaluation of Federally funded projects or for information that must be disclosed in order to meet the requirements of the federal Food and Drug Administration (FDA).

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.

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