Privacy

Researchers will always have a duty to protect your privacy and confidentiality.

If you decide to participate in this project, please understand your participation is voluntary and you have the right to withdraw your consent or discontinue participation at any time without penalty or loss of benefits to which you are otherwise entitled. Your genetic information will not be used in this or future studies if you withdraw prior to publication of study results; otherwise, we will not use your genetic data in future studies but cannot ensure that it will not be used by other groups once the results become public.

  1. All samples are deidentified and secure: your tissues will be stored in a locked freezer using a study id number instead of your name or any other identifiable information.  A list matching the number to the individual who provided the sample will be kept in a secure place away from the samples. Your name or other public identifiers will not be included with any data shared with other investigators.

  2. All genetic information and analyses are deidentified and secure: your de-identified (coded) data may be included in a secure database and shared with other researchers. This database is limited to qualified investigators that must submit a detailed proposal to access this genetic data.  None of your personal information (such as your name or social security number) will be placed in the database.

  3. Only the following institutions may disclose or use your health information: the Protocol Director (Euan Ashley MD DPhil), the Stanford University Administrative Panel on Human Subjects in Medical Research and any other unit of Stanford University as necessary, and ELITE Study research Staff.

  4. Only the following institutions may receive or use your health information: the Office for Human Research Protections in the U.S. Department of Health and Human Services, the Food and Drug Administration, and ELITE Study collaborators.

  5. You may withdraw at any time: If you decide to participate, you are free to withdraw your authorization regarding the use and disclosure of your health information (and to discontinue any other participation in the study) at any time. If you wish to revoke your authorization for the research use or disclosure of your health information in this study, you must write to: Brianna Bourne at Stanford University Falk Building, 300 Pasteur Dr, Stanford, CA 94305, or email her at bbourne@stanford.edu.

  6. The ELITE Study team abides by the participant’s decisions expressed in the study’s consent form: the ELITE Study team will follow the participant’s decisions regarding receiving information about certain heritable diseases, as indicated on their consent form.

Your individual privacy will be maintained in all published and written data resulting from the study.  

Additional resources

You can download a full copy of our Consent Forms here. You can also find Stanford’s Minimum Privacy Standards, by which all research at Stanford must abide, here.

If you have any questions about your privacy and data security, please contact our ELITE Study clinical research coordinator, Brianna Bourne at bbourne@stanford.edu. If you are not satisfied with how this study is being conducted, or if you have any concerns, complaints, or general questions about the research or your rights as a participant, please contact the Stanford Institutional Review Board (IRB) to speak to someone independent of the research team at (650)-723-5244 or toll free at 1-866-680-2906.

Get Involved

We invite faculty, students, staff, alumni, friends, and external organizations to participate in the ELITE Study at Stanford.

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