If you or someone in your family is considering genetic testing or wondering if a certain health condition could run in your family, or if you are pregnant and interested in learning more about genetic testing options during pregnancy, a genetic counselor is an outstanding resource.
- Genetic counselors can help you sort through complex information to understand the meaning of genetic tests so you can make informed decisions about what testing options, if any, are best for you.
- Genetic counselors strive to be non-directive. In other words, genetic counselors want to provide up-to-date, accurate and balanced information to help you make decisions about genetic testing that is right for you.
- Genetic counselors’ unique education allows them not only to be experts on the science of genetics, but also on the emotional impact of this information on individuals and families. Genetic counselors can help you identify support resources when needed.
- Genetic counselors typically spend from 30 minutes to an hour or more making sure that you have the information you need and that all of your questions are answered.
Will the genetic counselor tell me what to do about my pregnancy or whether to undergo genetic testing?
To the Point: Genetic counselors will provide you with the information you need to make the decisions that are right for you, but they will not tell you what to do.
Genetic counselors do their very best to give you information in a non-biased way and make sure you understand the information to make decisions that are most consistent with your own beliefs and values. You may have had an experience of seeing a healthcare professional and having them make recommendations or tell you what to do. When it comes to whether or not to undergo genetic testing (for example, in your pregnancy) and what to do with that information, genetic counselors believe that these decisions are very personal. Genetic counselors will not tell you what to do, but they will give you the tools to make informed decisions and support you along the way, whatever path you are on.
See below for more information and FAQs about genetic counselors and genetic counseling…
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If you had never heard the term genetic counselor until now, you are not alone. Genetic counselors are a relatively small group of professionals, with approximately 3,000 of them around the country. Genetic counselors have a Master of Science degree in genetic counseling, which provides training in medical genetics and counseling. Genetic counselors have earned college/undergraduate degrees in various disciplines, most commonly biology, psychology, or genetics.
Genetic counselors are often a part of a healthcare team, working alongside physicians and other healthcare providers. Below is a list of some of the clinical areas in which genetic counselors are helping patients.
- Assisted Reproductive Technologies/Infertility
- Cardiovascular Genetics
- Familial Cancer Risk Counseling
- Fetal Intervention & Therapy
- Metabolic Genetics
- Pediatric Counseling
- Personalized Medicine
- Prenatal Counseling/Ultrasound Anomalies
- Psychiatric Disorders
There are many different reasons that people meet with a genetic counselor, and genetic counselors work in many different specialty areas.
PREGNANCY AND GENETICS
In planning for pregnancy or during pregnancy, genetic counselors can help you understand different testing options, answer questions about concerns you may have about your family history, and provide information and support if risk factors are identified. Some common reasons for a referral to a prenatal genetic counselor include the following:
- Mom’s age
- Prenatal screening showing a higher chance of a genetic condition or birth defect (Quad/Triple/First Trimester screening/Sequential Screening/Integrated Screening/cfDNA)
- Diagnostic testing indicating that the baby does have a chromosome or genetic condition
- You or your partner was born with some type of serious health concern, birth defect, or genetic condition
- You have/had a child who was born with a birth defect, intellectual or developmental disabilities, or a genetic condition
- You or your partner has had 3 or more unexplained miscarriages, and/or a baby who passed away during infancy
- You or your partner had a concerning exposure during the pregnancy, like medication, drug, alcohol, infection, or radiation exposure
- You and/or your partner would like to discuss the chances of genetic conditions and possible carrier testing based on your ethnic background(s)
- You and your partner are blood relatives (e.g. first cousins) and you would like to discuss risks this may pose for your developing baby
- You have had an ultrasound and the doctor has identified ultrasound findings that may increase the chance of a genetic disorder.
- You and/or your partner has an extended family member(s) born with a serious health concern, birth defect, intellectual disability, chromosome condition, or other genetic condition
- You and/or your partner simply want to learn more about all of the prenatal testing and screening options available during the pregnancy
CANCER AND GENETICS
Cancer genetic counseling can help you figure out whether or not your have inherited an increased risk for cancer. Identifying an increased genetic risk can allow you to create a personalized care plan to reduce the risk for future cancers. Discovering an inherited risk may also have important implications for your family members. If you have a personal or family history of the following, you may want to consider genetic counseling:
- Cancer at a younger than typical age, such as breast or colon cancer diagnosed before the age of 50
- Three or more close relatives (first- or second-degree) on the same side of the family who have been diagnosed with cancer, especially the same type or related types of cancer
- More than one primary cancer in the same individual (e.g. two primary breast cancers, or colon cancer and uterine cancer)
- A rare type of cancer, or unusual presentation of a cancer (e.g. breast cancer in a male)
- A known genetic mutation in a cancer susceptibility gene in your family (e.g. a family member who is known to have a BRCA mutation)
- Your ethnicity is associated with a higher frequency of hereditary cancer syndromes (e.g. Ashkenazi or Eastern European Jewish descent)
GENETIC COUNSELORS IN OTHER SPECIALTY AREAS
There are many other specialty areas that offer genetic counseling services. Talk to your provider if you are concerned about your family history and think that genetic counseling could be of benefit in any other situations, such as cardiovascular genetics, neurogenetics, pediatrics, and personalized genomics.
It depends a bit on your reason for seeking or being referred for genetic counseling (e.g. prenatal, cancer, etc.), however, there are a few things that you can expect across the board.
The first question you may hear from your genetic counselor is, “Can you tell me a bit about why you are here to see me?” Genetic counselors ask this because they care about you, yes, but they also want to know what you already know so they can tailor the session to your needs. You may have very specific concerns and questions, or you may not know where to begin. Both are fine; genetic counselors want to meet you where you are.
Genetic counselors will want to discuss your family history, in detail. If you are unsure about your family history, don’t worry. There is a lot of information we can get from knowing your personal health history.
Once the genetic counselor has the family and personal health history information, they can let you know if there is anything concerning in your family history and offer appropriate information and testing options. The family history also may aid the genetic counselor in providing better risk assessment regarding the reason you have been referred.
Genetic counselors will explain relevant genetic or clinical information, go over test results, make sure you really understand the implications of the test results (what the results can and cannot tell you), discuss the pros and cons of further testing by keeping in mind your personal beliefs and values, provide supportive counseling, and refer you to other support groups if needed.
Many insurance companies do cover genetic counseling. However, you need to check with your plan to make sure.
It depends on the reason for referral, but genetic counseling sessions often last 45 minutes to more than an hour.
To locate a genetic counselor near you that you may be able to see in person, you can look up genetic counselors through the “Find a Counselor” resource page on the National Society of Genetic Counselor’s website.
If there is not a genetic counselor practicing in your area, you may be able to find genetic counseling through telehealth as another option. A company called Informed DNA hires Certified Genetic Counselors nationwide that can do telephone genetic counseling. Check out Informed DNA’s website for more information, http://www.informeddna.com.
No, genetic counselors should not pressure you regarding tests or other decisions. Genetic counselors are trained to offer non-directive counseling, which means they do their very best to give you information in an unbiased way and make sure you understand the information to make decisions that are most consistent with your own beliefs, personality, needs, and values.
Genetic counselors have a unique and valuable skill set that will help you make the best choices for you. Most people leave a genetic counseling session feeling more prepared and able to make informed decisions. Of course, the decision to see a genetic counselor is yours to make, but remember that genetic counselors are here to help!