Confidentiality and Ethics

CPS-3

All institutions that conduct or support research with human subjects are subject to regulatory requirements and are to be guided by the ethical principles of The Belmont Report. In 1974, Congress passed the National Research Act which created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Commission wrote the Ethical Principles and Guidelines for the Protection of Human Subjects of Research (commonly referred to as the Belmont Report). The Belmont Report contains the ethical principles upon which the federal regulations for protection of human subjects are based.

The investigators and staff who are conducting CPS-3 receive ongoing education and monitoring to ensure compliance with well-established ethical and regulatory requirements, through a partnership with the Emory University Institutional Review Board.

Confidentiality is of the utmost importance to us and we will make every effort to protect the privacy of study participants. We have multiple procedures in place to safeguard the personal information we collect. We will:

• label your data with a unique identification number when it is collected
• store your blood sample, survey data, and other study materials separately from all personal identifying information (like your name, address, and social security number)
• limit access to any identifying information to authorized study personnel only
• keep study documents in a locked, limited access research storage room
• have all staff sign confidentiality forms and undergo training in research ethics
• have all Volunteers sign confidentiality forms
• not share results with your family, your doctor, your employer, any insurance company, or other third parties and we will keep your records private to the extent allowed by law.