Moreover this study will help the Alliance and other organizations speak to the public policy needs of individuals and families with genetic conditions. Any information you send to the Genetic Alliance will be kept confidential. If you choose to use your name, your survey responses will not be linked to you in any way and your name will not be shared with anyone outside the Alliance office. The Genetic Alliance follows strict privacy procedures that require staff to safeguard individual names and store all identifying information in locked files. You can also choose to fill out the questionnaire anonymously.
Participation involves completing the brief questionnaire that follows.
Generally, the questions only require you to check yes or no. Completing all the questions should take approximately 5 to 10 minutes. Connecticut Avenue, N.W., Suite 404 Washington, D.C. 20008-2304 2. It can be discovered through genetic testing, having symptoms of a condition that another family member is diagnosed with, or being a carrier of a condition. A presymptomatic condition is a genetic condition that does not show now but may develop later.