Genetic Counseling is the process of helping people understand and adapt to the medical, psychological, and familial implications of genetic contributions to disease. This process integrates:
The interpretation of family and medical histories to assess the chance of disease occurrence or recurrence;
Education about inheritance, testing, management, prevention, resources, and research;
Counseling to promote informed choices and adaptation to the risk or condition.
A genetic counselor is a health professional with specialized graduate degrees and experience in the areas of medical genetics and counseling. Genetic counselors provide supportive counseling to families, serve as patient advocates, and refer individuals and families to community or state support services. They serve as educators and resource people for other health care professionals and for the general public. Some counselors also work in administrative capacities. Many engage in research activities related to the field of medical genetics and genetic counseling.
To learn more general information about genetic counseling, tips on how to prepare for a genetics clinic appointment, and details about different specialties in the field of genetics, please see the new Genetic Alliance collaborative publication Making Sense of Your Genes: A Guide to Genetic Counseling.
NNPDF has a variety of educational and resource materials that are available on this web site including:
- Information about Niemann-Pick disease types A, B, and C for health care providers, and for family and friends
- Diagnostic and Genetic Testing
- Middle and high school curriculum supplement about Niemann-Pick disease
- Material on the education of the child who has a neurodegenerative disorder
- Information about bone marrow transplantation and stem cell transplantation
- Approaches to care of the caregiver
- Hospice and respite care resources
- Grief Support information
- Teens and chronic illness, and transition to adult care
Family History Tool
During the Thanksgiving holidays, many groups were promoting the importance of knowing your family health history. They suggested that we collect and record information as we meet with relatives during the holiday season, but really, anytime is a good time to do this! To make it easier to record the information you collect, there is an online, easy-to-use tool that the Genetic Alliance has shared with member organizations. Please check out “It Runs in My Family” (www.itrunsinmyfamily.com) for details.
For more information about genetic counseling contact the NNPDF.