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  How to Find a Genetic Counselor

By Mark Redfearn, Mdiv and Mignon Fogarty, MS

Reviewed by Larry Prensky, MS, CGC, CCGC and Kari Danziger, MS, CGC



If you have a strong family history of a disease and are concerned that you could be at risk, you may want to seek the advice of a genetic counselor. These specially trained health professionals can answer your questions and sort out the real level of risk for you and your family. Genetic counselors can also help you decide appropriate genetic testing, screening, and prevention strategies, and provide emotional support directing you toward the most relevant resources. Talking with a genetic counselor is often the first step toward understanding and dealing with your family's medical condition, or your inherited risk for a condition.

 
 
 

How Can I Find A Genetic Counselor?

Finding a genetic counselor can seem like a daunting task if you are unfamiliar with the services in your area. Depending on where you live, you may have many options or a very limited choice of counselors. There are a number of ways you can begin your search.

Your Doctor. Often the first place to start when you are trying to find a genetic counselor is with your doctor. In addition to being aware of the nearest genetics center, your doctor may also be able to provide a direct referral, which is necessary for coverage by some insurance plans.

The National Society of Genetic Counselors. If your doctor cannot help you, or you wish to find a genetic counselor on your own, the National Society of Genetic Counselors Web site provides listings of genetic counselors by location. This list does not include every genetic counselor in your area, but is a place to start, and can give you an idea of the location of the closest clinic. (See Resources, below.)

Regional Genetics Networks. In addition to the National Society of Genetic Counselors, there are also regional organizations related to genetic counseling. Each of these Networks has a directory of services available in their region. (See Resources, below.)

The National Cancer Institute. If you are specifically concerned about inherited cancer, CancerNet, a service of the National Cancer Institute provides a Web page where you can search for a genetic counselor or doctor by the type of cancer they specialize in, or their location. (See Resources, below.)

Your Insurance Provider. Your insurance provider may be able to direct you to a local genetic counselor, however it is always wise to understand what your insurance benefits are before making an appointment. It is possible that your insurance provider may have contracted with specific genetic counselors to provide services in your area. For example, HMO's are likely to direct you to a specific counselor. Other insurance companies may allow you to select your own genetic counselor.

The Phone Book. Don't overlook your local telephone book. Genetic counselors are often affiliated with university-based medical centers. For example, they may be based in departments of pediatrics, genetics, oncology, maternal and fetal medicine, or obstetrics and gynecology. A few calls may get you to someone who can help you.

In some less populated areas where there are few genetic counselors, those from larger clinics sometimes visit outlying areas at regular intervals to serve the genetic needs of these communities. Therefore, even if you don't find a clinic in your immediate area, it can be worth your time to check with the clinic in the nearest large city to see if they have such an outreach program.

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Do Genetic Counselors Ever Offer Services by Phone or E-Mail?

Most genetic counselors prefer to meet in person.
Although long-distance counseling is sometimes possible, most genetic counselors prefer to meet in person due to the complicated nature of most consultations and the frequent need for laboratory tests at a genetics center. However, under some circumstances, genetic counselors will work with clients by phone or e-mail; for example, when the affected family member lives locally and other relatives live at a distance. Most often, however, the genetic counselor will try to help the other family members find resources in their own community.

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Are There Different Kinds of Genetic Counselors?

Depending on your specific circumstances, you may be referred to a counselor with a different specialty.
Depending on your specific circumstances, you may be referred to a counselor with a different specialty. For example, there are genetic counselors who specialize in cancer genetics, and others who specialize in prenatal counseling. However, some counselors do not specialize in a specific area and may see patients with a wide variety of needs.

Many counselors enter the field from a medical or scientific background. Traditionally, genetic counselors must have obtained a masters degree, and many are also certified by the American Board of Medical Genetics or the American Board of Genetic Counseling. As part of this certification, genetic counselors earn continuing education credits that keep them abreast of new developments in the field. Exams for certification are only held every three years, thus there are many capable counselors practicing at any given time who have not received certification by one of these boards.

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What Can I Expect to Pay for Genetic Counseling?

Genetic counseling is typically covered by medical insurance.
Genetic counselors often bill under the name of a supervising physician. In such instances the price is set by the institution and not the genetic counselor. You can expect to pay roughly $150 per hour for genetic counseling, but the price varies from institution to institution and by the complexity of the situation. Some genetic counselors are in private practice, but the majority work for hospitals or private companies. Genetic counseling is typically covered by medical insurance. However, it is important to check with your insurance company regarding your particular coverage.

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Resources and Directories of Genetic Counselors

National Society of Genetic Counselors. Search for a genetic counselor by location.

CancerNet. Search for a genetic counselor with expertise in hereditary cancer.

Regional Genetics Networks

Southeastern Regional Genetics Group (AL, FL, GA, KY, LA, MS, NC, SC, and TN)

Mountain States Regional Genetics Network (AZ, CO, MT, NM, UT and WY)

Texas Genetics Network (Clinical Genetic Services Referral )

Pacific Southwest Regional Genetics Network (CA, HI, and NV)

Pacific Northwest Regional Genetics Group (AK, ID, OR, and WA)

New England Regional Genetics Group (CT, ME, MA, NH, RI, and VT)

Mid-Atlantic Regional Human Genetics Network (DE, MD, NG, PA, VA, WV, and Washington D.C.) (Information on how to order their hardcopy directory. Directory is not available on the Web.)

Great Plains Genetics Service Network (AR, IA, KS, MO, ND, NE, OK, and SD)

Great Lakes Regional Genetics Group (IL, IN, MI, MN, OH, and WI) (Click on Directory of Clinical Services to download a PDF version of their directory.)

Genetics Network of New York, Puerto Rico, Virgin Islands

International Resources

Search by country to find a counselor at The National Society of Genetic Counselors.

Genetic centers in Belgium

Genetic centers in the British Isles

Canadian Association of Genetic Counselling

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