We are committed to protecting the confidentiality of your interview and genetic information. We will securely store your research results under a code number separate from your identifying information. At the end of the study, your genetic results, and some of your interview data, will be shared with other investigators through a large data repository. We will only do so in an anonymized manner using a different assigned code that cannot be linked to you. Your identity will not be revealed in any publication or presentation of the results of this research.
We have also obtained a Certificate of Confidentiality from the Department of Health and Human Services (DHHS) that may protect us from being forced (for example by subpoena) to disclose information that may identify you in any civil, criminal, administrative, legislative, or other proceeding. Protected Health Information (PHI) is health information that identifies you. It is protected by a federal law, the Health Insurance Portability and Accountability Act (HIPAA). Another federal law, the Genetic Information Nondiscrimination Act (GINA), makes it illegal for health insurance companies, group health plans and employers with more than 15 employees to discriminate against you based on your genetic information. If you have questions or concerns about your privacy and the use of your PHI, please contact the University’s Privacy Office by calling 866-747-4975 or emailing hipaa@wustl.edu.
