Protecting Your Privacy and Confidentiality

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Your Privacy 

Privacy concerns you as a person and how and where information about you is shared.  To help protect your privacy, our conversations and assessments will occur in private locations such as in your home.  If you take part in an open enrollment event or with a large group, conversations and assessments will occur in separate rooms or behind privacy screens. We will keep your participation in this research study private to the extent permitted by law through the use of code numbers, locked files, and restricted access to data.  Members of our research team will have access to coded study information only.  However, federal government regulatory agencies and Michigan State University Institutional Review Board (a committee that reviews and approves research studies) also may inspect and copy records pertaining to this research.  Some of these records could contain information that personally identifies you. 

In the event of any report or publication from this study, your identity will not be disclosed.  If we write a report or article about this study, we will describe the study results in a summarized manner so that you cannot be identified.  Your contact information will not be sold or distributed to any outside party or institution.

Your Confidentiality

Confidentiality concerns information or data that is collected during your participation on a research study.  To help protect your confidentiality, we will use identification code numbers only on data forms and on biologic samples.  The file that links the ID numbers to personal identifiers will be kept in a secure location separate from data files; only the project coordinator and principal investigators have access to this information.  The information we collect for the study will be stored in locked filing cabinets and storage areas and in password-protected computers.

Family history information included in a pedigree may be published, if relevant, but without identifiers.  In most cases, it would be very difficult to determine the names of people in a pedigree in a medical publication.  However, the family tree could possibly be used to determine the identity of the individuals.  To minimize this risk in families in which it might be possible to determine the identity of the individuals, the researchers will modify the pedigree for publication purposes so that identities of family members cannot be determined.


A Certificate of Confidentiality means that the researchers cannot be forced to disclose information that may identify you, even by a court subpoena, in any federal, state, or local civil, criminal, administrative, legislative or other proceedings. But, if you request disclosure, we can release the information.

The Certificate cannot be used to resist a demand for information from personnel of the United States Government that is used for auditing or evaluation of federally funded projects.

The Certificate of Confidentiality does not prevent the researchers from disclosing voluntarily, without your consent, information that would identify you as a participant in the research project under the following circumstances; If, as part of your participation in this research study itself, we learn about serious harm to you, your child or someone else, we would take steps to prevent that harm including notifying appropriate authorities like the police or child welfare.

CoSAGE has applied for a Certificate of Confidentiality from the National Institutes of Health; the application is currently under review.