how will my info be used

In today’s world privacy issues are one of the most important areas of concern for people.  Due to those concerns and also because it is required by the Institutional Review Board (IRB), we comply with rules and guidance when we handle any personal information. 

The Institutional Review Board (IRB) at the University of Minnesota is a group of people especially selected from different departments and outside the University to ensure the ethical conduct of research of human beings. This Board is part of the Human Research Protection Program that develops and implements policies and practices to ensure the adequate protection of people who participate in research at our institution. The HRPP reports to the Office of the Vice President for Research


The 10,000 Families Study uses the following guidelines to ensure your privacy:

  • We store your personal information, from your name and contact information to the data collected at every step of your participation process, on protected servers and in a secure laboratory.
  • From the team of researchers to the staff visiting with potential participants, everyone is trained in confidentiality and privacy protections, as well as research ethics in general.
  • The University of Minnesota Institutional Review Board (IRB) monitors and approves each one of our processes. The IRB also reviews and approves any changes that could affect study participants before those changes are presented to people at any step of our process.
  • When working with your personal information only the study team will have access to your information, and only for study purposes.  Any information used by other researchers and/or laboratories is combined with other study participants’ information and won’t have any personal identification that could be connected to you. We will never sell your samples or information.
  • You are always in control of your personal information because you can:
    • Withdraw from the study at any time;
    • Request that your information be destroyed or be kept out of future research if you withdraw;
    • Formally request that our study release results from your participation (except genetic tests) to any of your health care providers. 

For additional questions or concerns

Do not hesitate to contact us at [email protected] or “Connect with Us”.

Have more questions, please review our frequently asked questions


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