The decision to share your diagnosis with different people in your life is personal. Many people start by sharing the diagnosis with their family. However, stigma, privacy fears, and cultural issues can make such conversations difficult to initiate. Genetic Alliance partners with companies, government agencies, and nonprofit organizations to create resources to empower individuals to have discussions about health and diagnoses with family and loved ones.
For more resources on sharing and managing a diagnosis, visit www.genesinlife.org.
A Guide to Sharing Your Diagnosis
Genetic Alliance, in partnership with Genzyme, has created a series of guidebooks to help you through the process of sharing health information with your family. These books detail specific genetic disorders such as Pompe, Gaucher, Fabry, and Lynch syndrome, but some basic approaches and strategies can be used to help you talk about your health history, whatever it is, with your family. These customized booklets can be viewed on our publications page.
If you would like to create resources on sharing diagnosis for a different condition or community, email info (at) geneticalliance (dot) org. We can help you put together brochures or booklets to help patients share their diagnosis with family members. Content can include information on major signs and symptoms, how the conditions are passed down through families, and other condition-specific issues as well as more generally applicable information on family health history and how to prepare for and start conversations with family members about health.
Discussions about health are not just a family issue; they are also a public health issue. Many health conditions run in families, so if one family member has a condition, it is likely that others have it or will develop it in the future. Screening for early detection and disease prevention saves lives. Cascade screening is the process of testing immediate and extended family members for a condition once someone in the family is diagnosed. It is recommended for family members of individuals with hereditary breast and ovarian cancer, Lynch syndrome (also know as hereditary nonpolyposis colorectal cancer), and familial hypercholesterolemia.
This video produced by Genetic Alliance with the University of Michigan, Center for Public Health and Community Genetics, provides more information on cascade screening and its values in public health.