What is genetic counseling?
Genetic counseling is the process of helping individuals understand and adapt to the medical, psychological and familial implications of genetic contributions to disease in order to help them make informed decisions about their health care. Our genetic counselors offer genetic counseling services that are centered on possible hereditary susceptibilities to cancer and other diseases or conditions.
Why might I be referred to genetic counseling?
- You have a personal or significant family history of cancer, autism spectrum disorders, developmental delays, learning disorders and intellectual disabilities, neurological disorders, neuromuscular disorders, connective tissues disorders, skeletal disorders, vision or hearing disorders, birth defects (such as cleft lip/palate, spina bifida, brain malformations, or heart defects), abnormal stature or growth.
- There is a known genetic condition running in your family.
- You simply have genetics questions and would like to discuss someone to assess your personal and family history, to help you understand if genetic testing may be beneficial for you or for a family member.
What can genetic counselors do?
- Assess the risk of having a child or other family member with a genetic disorder
- Assess the risk of having an inherited disease that affects your health later in life
- Make recommendations for genetic testing, such as which genetic tests may be right for you and what those tests may or may not tell
- Explain possible scenarios and outcomes and help you make informed decisions
What happens in a genetic counseling session?
- A complete family history is assessed.
- Discussion of what genetic testing may be appropriate for you to consider, including risks, benefits, limitations, and utility of genetic testing, as well as implications of possible genetic testing results
- Psychosocial support, resources, and advocacy
- Does genetic counseling mean that I will have to have genetic testing done?
- No. The purpose of genetic counseling is to provide you with a more thorough assessment of you and/or your family’s risk of disease or genetic condition, possible genetic testing options, what can be done to prevent/manage a disorder or disease, and to empower you to make your own informed decisions about your healthcare.
Benefits of genetic testing
- Appropriate recommendations for genetic testing and diagnosis of a genetic condition
- Increased knowledge for oneself and for family members about their risks for certain diseases or genetic conditions, as well as insight as to why the disease or condition may have occurred.
- The opportunity to incorporate personalized and preventive management options.
- Psychological benefits of decreased anxiety and uncertainty.
How to prepare for your appointment
Genetic counseling consults at KRH are currently a complimentary service, funded by nonprofit organizations. Insurance coverage of genetic testing varies depending on your insurance carrier and indication(s) for testing. Your genetic counselor can discuss options with you and help you determine what the costs would be, if testing is recommended. Most people can obtain testing at little to no cost if genetic testing is recommended by your physician and genetic counselor.
If you do not have insurance or have a high deductible, you may be eligible for coverage of genetic testing costs through certain financial assistance programs.
What should I bring to my genetic counseling appointment?
- Families who want to participate in genetic counseling are asked to provide a detailed personal and family medical history. This includes gathering information about both sides of your immediate and extended family—including mother and father.
- You may be asked to name conditions within your family and provide information on past and present illnesses, pregnancies, intellectual disabilities, history of cancer and chronic conditions. You may want to prepare a list of questions to discuss with your genetic counselor to make sure we address all concerns.
- If any relatives in the family have had genetic testing performed, it is very important you bring a copy of your relative’s results with you to your appointment.