1. Description

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The CCGF is working to advocate on behalf of those living with, or at risk of, genetic disorders to prevent genetic discrimination*. We have been meeting with government officials to discuss this issue and explore solutions. We want to be able to provide stories to those in government. It is only by hearing from people such as yourself about your experience(s) with genetic discrimination that can help policy-makers understand the importance of this problem.

Please complete one of these sheets for each experience you have had with genetic discrimination (for example, if you had 2 experiences with insurance discrimination, please fill out this survey twice to describe each experience separately). At the end of the survey, you may choose to include your contact information which would allow us to discuss or clarify any information you provided or you may choose to leave the survey anonymous. Thank you.

*DEFINITION OF GENETIC DISCRIMINATION: Genetic discrimination is the act of using genetic information against a person or group. Examples of genetic discrimination include the experience of genetic information used in decisions related to employment, hiring, insurance, etc. Genetic discrimination happens when people are treated unfairly because of their genetic risk or genetic test result which predisposes them to future illness. Some examples include: being rejected for employment, being given a lower level of employment or losing insurance based on a person’s genetic risk that shows they may be ill in the future.