How we will protect you.

To help protect your confidentiality if you choose to be a part of this study, your DNA and associated data will be tracked using a numerical study code ID. These data will be stored on a secure computer network behind an internet firewall. Access to these data will be restricted to members of the study team who have completed privacy training. All biological specimens will be stored in tubes that are labeled with a unique numerical study code ID in freezer space which has limited access. When biological specimens are being transported or transferred, they will be identified only by the unique numerical study code ID. The master list that links the unique numerical study ID code to patient identifiers will be kept separately and will only be accessible to members of the study team listed on the IRB protocol who have completed HIPAA (the Health Insurance Portability and Accountability Act) training.

Protections for my health information

Protected Health Information (PHI) is health information that identifies you. PHI is protected by federal law under HIPAA. To take part in this research, you must give the research team permission to use and disclose (share) your PHI for the study. The research team will follow state and federal laws and may share your health information with the agencies and other relevant persons listed below:

    • Government representatives (including the Office for Human Research Protections) to complete federal or state responsibilities
    • The U.S. Food and Drug Administration
    • People who use the BioBank
    • Hospital or University representatives to complete Hospital or University responsibilities
    • Information about your participation in this study may be documented in your health care records and will be available to anyone with access to your health care record, including your health insurance company. This information may also be released as part of a release of information request.
    • Washington University’s Institutional Review Board (a committee that oversees the conduct of research involving human participants) and the Human Research Protection Office. The Institutional Review Board has reviewed and approved this study.

Any report or article that we write will not include information that can directly identify you.

It is important to note that the journals that publish these reports or articles require that we share your information that was collected for this study with others to make sure the results of this study are correct and help develop new ideas for research, however, your information will be shared in a way that cannot directly identify you.

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