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What Do Genetic Counselors Do?
Genetic counselors have specialized education in genetics and counseling to provide personalized help to patients who may need to make decisions about their genetic health.
They interpret genetic test results to guide and support patients seeking more information about such things as what genetic tests might be right for them, how certain diseases and conditions might affect their families, and how to make the best decisions about healthcare options 1.
What's in this Guide?
- What Do Genetic Counselors Do?
- Are There Different Kinds of Genetic Counselors?
- Your DNA Test Results Are In, Now What?
- What are the Benefits of Genetic Counseling?
- Costs of Genetic Counseling
- Where You Can Find a Genetic Counselor
- Can I have genetic testing without seeing a genetic counselor?
- Careers in Genetic Counseling
- So, you want to be a genetic counselor?
- How much genetic counselors earn
- If you want more information about genetic counseling…
Disclaimer: Before You Read
It is important to know that your genes are not your destiny. There are various environmental and genetic factors working together to shape you. No matter your genetic makeup, maintain ideal blood pressure and glucose levels, avoid harmful alcohol intake, exercise regularly, get regular sleep. And for goodness sake, don't smoke.
Genetics is a quickly changing topic. Read More...
Most genetic counselors work in a clinic or hospital. They will often partner with other healthcare providers such as oncologists, cardiologists, obstetricians or other medical professionals. Some counselors are also focused on doing research as well.
Are There Different Kinds of Genetic Counselors?
As genetic counseling continues to grow and expand, more and more counselors are beginning to specialize in interpreting narrowly defined types of results.
There are several types of counseling that can be offered patients. Some of these include:
- ART/Infertility Genetics
- Cancer Genetics
- Cardiovascular Genetics
- Cystic Fibrosis (CF) Genetics
- Fetal Intervention and Therapy Genetics
- Hematology Genetics
- Metabolic Genetics
- Pediatric & Clinical Genetics
- Personalized Medicine Genetics
- Prenatal Genetics
In addition to meeting with patients, genetic counselors also serve key roles in education, health information technology, industry, public health, research, and telegenetics 2.
Your DNA Test Results Are In, Now What?
If you haven’t met with a genetic counselor prior to taking tests, there are some things you need to do in advance of your visit. This will ensure the most accurate and thorough interpretation of your results.
The most important thing to do is to gather your medical records and your family health history. You should get information about medical conditions among your siblings, parents, aunts, uncles, cousins, grandparents, children and grandchildren.
Focus on the medical records of those family members who are affected by a genetic condition. And don’t forget to include your own health history.
Make sure to note if anyone in your family has already taken a genetic test and include those results if they are available.
Specific things you should gather about your family medical history should include:
- Age or date of birth, and cause of death for those who have died
- Medical problems any of them had and at what age (even approximately) they were affected, including ailments such as cancer, heart disease, diabetes, mental illness, kidney disease, birth defects, infertility, and autism.
- For those who have medical problems, include any information that might be helpful, such as whether they smoke, exercise, are overweight.
You can use these resources to also help you complete a family history:
- Family Health History Fact Sheet from the National Society of Genetic Counselors
- Family health portrait from the U.S. Surgeon General
- Family medical history information from the American Medical Association
With all of the in hand, you are ready to meet with a counselor. Resist the urge to self-diagnose and misinterpret the results or draw the wrong conclusions. Results may be technical and contain a lot of data, so you might also be experiencing a high level of anxiety in not knowing how to understand what all the results mean.
Genetic counseling frames the results for you, either alerting you to possible heightened risks or easing your mind when certain gene mutations are not present. This also allows you to share results with family members so they can begin to do their own risk assessments.
Keep in mind that just because a genetic mutation is found, it does not automatically mean that it is harmful to you 3.
You can also benefit from know about a result that is inconclusive. This could mean that a genetic mutation was found but that science does not yet know enough about the mutation to be able to guide you to make appropriate choices at this point 4.
With the help of a genetic counselor, you can stay informed on new developments at some point in the future that may be related to the mutation.
What are the Benefits of Genetic Counseling?
There are several reasons why someone would seek genetic counseling. Not only are there medical findings to be concerned about, there is also a psychological element as well that comes from being armed with knowledge about your current and future health issues.
When you have the best possible medical information available to you, you can be empowered to make the best possible decisions regarding steps to take for your health in both the short-term and long-term future. Genetic counseling can act as a warning system and with some luck, you can stop or significantly reduce a problem before it becomes life threatening.
Finding out if you’re predisposed for a certain disease or condition or not can also put your mind at ease and allow you to focus on real health issues that may actually affect you at some point in the future. Getting a negative results can save you years of worry when you know something is less likely to happen to you based on your genetics.
This can also extend to family members as well. Armed with your own genetic testing and counseling results, you can use that information to also do a better job of managing your family’s health issues too.
Knowing what you may or may not pass on to your children could also have an impact regarding the decisions you make on pregnancy in the years to come.
It’s also important to note that knowledge about genetic testing and counseling are evolving rapidly. As science continues to mushroom in this area, the types of tests and data that are now available are adding to a significant body of research that is being applied across the board.
Because of this, genetic counseling is playing a bigger role that ever as part of an integrated healthcare approach for many patients. The communication with other medical providers about important patient medical information is becoming more prominent as the desire to learn more about complicated genetic information becomes more mainstream.
This is not to say there aren’t some drawbacks with genetic counseling as well. There is a downside of learning a lot about your own medical profile that could depress you if you hear unwelcome news.
And that may spread further because you might guilt out over passing a genetic mutation along to your children as well.
Even after the predisposition for a condition has been identified, and preventative steps are taken, it doesn’t mean that mitigation efforts will always work either 5.
Other downsides are that nothing is certain with testing because you may never develop the conditions that have been identified, and testing can be costly, sometimes well into the thousands of dollars.
Costs of Genetic Counseling
To best determine your out -of-pocket expenses, the first thing you should do is check to see if your insurance company will cover a genetic counseling visit. Many health insurance companies will cover the cost for genetic testing and counseling if a person meets certain criteria 6.
Patients not covered by health insurance can expect to pay about $150 per hour or more for genetic counseling. The amount of time required for genetic counseling will vary based on how much research and interpretation is required.
With insurance coverage, a normal out-of-pocket expense will be in the range of $15 to $35.
A genetic counselor should be able to assist you in determining if your insurance will cover genetic testing. They can also help you appeal if coverage is denied. In addition, financial assistance is often available for those who require it.
Where You Can Find a Genetic Counselor
One of the best ways to find a trusted genetic counselor is the seek a referral from your primary care physician. If you use a genetic testing service, they will also be able to refer you to a genetic counselor as well. In some cases, testing services also have counselors on staff.
Depending on your insurance situation, if you want them to pick up the costs, there may be genetic counselors who are in network that you would be required to use. You should check with your provider to see if going to a genetic counselor may be required even before you proceed with any kind of testing.
As part of your search, look for a medical professional who is a Certified Genetic Counselor (CGC). To be certified, a genetic counselor must demonstrate knowledge, skills and abilities by successfully completing the certification examination administered by the American Board of Genetic Counseling (ABGC) 7.
Some insurance companies will require that a counselor have the CGC designation to approve a co-payment on your behalf.
You can also locate a CGC near you by using the ABGC search tool that you can find here.
The National Society of Genetic Counselors also maintains a search tool to help interested parties locate genetic counselors as well. You can find the locator tool here.
Can I have genetic testing without seeing a genetic counselor?
Yes, but it may not be advisable. The two components work best together to give patients not only important results, but the proper interpretation of those results as well 8.
Some people choose to undergo genetic counseling before genetic testing, such as when a couple is considering pregnancy and becoming parents. Genetic counseling before pregnancy can address issues that might affect a baby during infancy or childhood, or even challenges that a couple may be facing with getting pregnant.
A counselor may look at conditions that run in you or your partner’s family, if there is a history of infertility, miscarriages or stillbirths, or if any previous pregnancies were affected by birth defects.
Others take part in genetic counseling after the fact so that they can fully understand the results of genetic testing that has already taken place.
Based on test results, adults can also seek counseling to determine how concerned they should be with conditions such as cancer, muscular dystrophy, heart disease, Huntington’s disease, sickle cell disease or many others.
When testing and counseling are paired together, they can provide the full spectrum of insights needed to make important lifestyle and health decisions for you and your family.
Careers in Genetic Counseling
Because this field continues to expand rapidly, there is a growing need for genetic counselors. There is a projected job growth of 28% in the profession from 2016 to 2026 9.
Genetic counselors typically need a master’s degree in genetic counseling or genetics as well as courses in counseling, patient empathy, ethics, public health, epidemiology and clinical research as well.
In 2016, there were 33 master's degree programs in the United States that were accredited by the Accreditation Council for Genetic Counseling 10.
As of 2016, 22 states required genetic counselors to be licensed 11. Certification is typically needed to get a license. For specific licensing requirements, contact your state's medical board.
Employers typically require or prefer prospective genetic counselors to be certified, even if the state does not require it.
The American Board of Genetic Counseling (ABGC) certifies genetic counselors and while certification is not required everywhere, it does provide additional important credentials and standards that indicate a high degree of competent genetic counseling will be provided by the practitioner.
You can also get a comprehensive overview of genetic counseling careers published by the Bureau of Labor Statistics.
So, you want to be a genetic counselor?
Since 2006, the number of genetic counselors has risen by 85% 12, reflecting an explosive growth overall in the field of genetic testing. However, there is still a projected need for even more counselors going forward.
As a genetic counselor, you can expect to be involving in a rapidly changing field which means you’ll need to constantly work hard to stay abreast of new developments.
You must have excellent communication skills and be comfortable talking with patients from all walks of life as well as laboratories, doctors, specialists and others in a highly technical and constantly evolving landscape. You may also be expected to do research at some point in your career, or you may choose it as a primary focus to help advance patient care.
Critical thinking skills and excellent decision making skills are also often cited as important qualities for genetic counselors who must apply scientific and technical knowledge and translate it into a compassionate delivery of information and advice for patients they serve.
How much genetic counselors earn
The median annual salary for genetic counselors is about $75,000 per year or about $35 to $38 per hour.
Pay varies by the place of employment.
Medical and diagnostic laboratories:
Offices of physicians:
Hospitals; state, local, and private:
Colleges, universities, and professional schools; state, local,
If you want more information about genetic counseling…
NSGC offers user-friendly tools and resources to help patients find answers to the questions they may have about genetic counselors.
ACMG is geared more towards academia and for healthcare professionals, but still offers a variety of information for the public
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Robert Resta Barbara Bowles Biesecker Robin L. Bennett Sandra Blum Susan Estabrooks Hahn Michelle N. Strecker Janet L. Williams. 19 May 2006.
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TeensHealth from Nemours. The Nemours Foundation. 2019.
- How Do I Understand My Test Results?
National Society of Genetic Counselors (NSGC). aboutgeneticcounselors.com.
- Seeking Your Genetic Information: Pros and Cons.
- Does Insurance Cover Genetic Counseling and Testing?
National Society of Genetic Counselors (NSGC). 2019.
American Board of Genetic Counseling, Inc. 2019.
- Genetic evaluation and testing for hereditary forms of cancer in the era of next-generation sequencing.
Christine Stanislaw, Yuan Xue, and William R. Wilcox. Cancer Biol Med. Mar 2016.
- Genetic Counselors: Salary, career path, job outlook, education and more.
- 25 Careers that Require a Master’s Degree.
- Genetic Counselors - Career, Salary and Education Information.
CollegeGrad LLC. 2019.
- ABOUT GENETIC COUNSELORS. Interested in Becoming a Genetic Counselor?
National Society of Genetic Counselors. 2019.