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Privacy and Data Protection

Your privacy and protecting the information you choose to share with us is extremely important to the HS&B research team. We have several security measures in place to protect your privacy.

● Any information you provide to us can only be used for research purposes.

● Your name and other identifying information will be removed before other researchers can see your data. This includes any biological samples you may provide in the health visit. Identifying information will never be released to the public.

● A limited number of authorized project personnel will have access to the protected computers where your data will be stored.

● We have strict internal policies and procedures to prevent misuse of data, including signed confidentiality agreements from all research staff prohibiting them by law from using the obtained information for any purposes other than this research study.

● We obtained a Certificate of Confidentiality from the National Institutes of Health. This protects us from any legal demands to release information that can identify you.

Preventing Genetic Discrimination

During the home health visit you will be asked to donate a blood and saliva sample. Some people worry that research about their genes might lead to discrimination in employment or health insurance against people who are found to have a higher average risk of certain health conditions. The federal Genetic Information Nondiscrimination Act of 2008 (GINA) makes it illegal for health insurers or most employers to discriminate against you based on your genetic information. Further, health insurance companies and employers may not ask us for information about your genes that we get from this research. You may decide at the time of your health visit which measures you’re comfortable completing.

My Rights as a Research Participant

All research on people is reviewed by a committee that works to protect your rights and welfare. If you have questions or concerns about your rights as a research subject you may contact the IRB Manager at NORC at the University of Chicago, toll-free, at 312-759-4023 or toll-free at 1-877-346-7151. Please refer to protocol 21-02-148. IRB Date Approved: 03/03/2021 under the My Rights as a Research Participant section.


If you have any questions about this part of the study, please contact NORC at the University of Chicago at HS&B@norc.org or by phone toll-free at 1-877-346-7151. A HS&B staff member will respond promptly.