The National Society of Genetic Counselors (NSGC) believes that any request for genetic information from a workplace wellness program must be predicated on an evidence base that demonstrates improved health outcomes. Genetic information should be defined in accordance with GINA to include family health history and genetic test results of individuals and family members.
Federal and state regulations must ensure the health information that workplace wellness programs collect is secure, is not used to discriminate, and is used only to promote participants’ wellness. In addition, wellness programs should never provide employers access to identifiable genetic information.
Collecting genetic information from an employee, his/her spouse, and/or family members should always be a voluntary component of a workplace wellness program, and participants should not be subject to coercion, financial penalty, or inducement. Participants who choose to share genetic information should undergo a separate informed consent process and have access to healthcare professionals with genetics expertise, such as certified genetic counselors. (2017)