About Genetic Counseling

​PAGC was formed to promote genetics education, foster professional development,  encourage communication and facilitate access to services in the state of Pennsylvania. Professional membership, participation in conferences and webinars, and volunteer support are crucial to our success!

WHAT IS GENETIC COUNSELING?


​Genetic counseling is the process of helping people understand and adapt to the medical and psychological implications of inherited or genetic disease.

Some examples include:

  • Education about specific genetic or hereditary conditions
  • How inherited or genetic diseases may be passed through a family
  • How family and medical history can influence risk for developing disease
  • Options for genetic testing, what testing might be appropriate and what those results mean
  • Legal and ethical considerations for genetic testing and genetic test results
  • How to make the most informed choices about healthcare conditions
  • The potential impact of genetic information on family relationships or dynamics




WHAT IS A GENETIC COUNSELOR?


Genetic counselors are specially trained healthcare professionals with background and experience in medical genetics and counseling. Most genetic counselors have a Master's-level Genetic Counseling degree from a graduate program accredited by the Accreditation Council for Genetic Counseling (ACGC) and are certified through the American Board of Genetic Counseling (ABGC).

Genetic Counselors work as members of a healthcare team to assess family history, provide education about inherited conditions or support individuals at risk for developing inherited conditions. They assist in decision-making, interpreting genetic testing results and helping individuals and families process the meaning of genetic information. Additionally, genetic counselors can work for genetic testing companies to optimize patient care by educating healthcare providers or by assisting in the interpretation of genetic test results.




WHAT DO GENETIC COUNSELORS DO?


Genetic counselors work in many areas of medicine and their job responsibilities are unique to each specific role. The main specialty areas of clinical genetic counseling include cancer, prenatal, pediatric and adult genetics. There are many other sub-specialties that include neurology, cardiology and metabolic genetics, etc. Some other genetic counselors work outside a clinical setting in research, education, public health, laboratory or corporate settings.

While each specific role is different, all genetic counselors have an in-depth understanding of genetic conditions and genetic testing. They are able to interpret the meaning of genetic test results, explain information clearly to patients or other healthcare providers, and support emotional needs of individuals impacted by genetic information.




WHAT HAPPENS DURING A GENETIC COUNSELING SESSION?


During a genetic counseling session, a genetic counselor will address and talk about any concerns for genetic conditions in a family. They will ask very specific medical and family history questions to map out a genetic family tree, also called a pedigree. Pedigrees help to identify patterns in a family that may be informative about genetic risk. Based on this information, genetic counselors can determine risk for a condition, provide additional medical information about that condition, discuss the benefits and limitations of any genetic testing that may be available, and help patients make informed decisions about their health care.

If a patient decides to undergo genetic testing, genetic counselors are available to help order the testing, interpret the test results as it applies to one individual or a family, and provide emotional support for the impact of that genetic information. They can also provide high quality, accurate patient educational resources and contact information for support groups.

​Most patients will meet in-person with a genetic counselor one to two times. While most genetic counseling is provided in-person, there are alternative options available for patients who may not live close to a medical facility with a genetic counselor or who may not be able to travel. There are now consultation services available by telephone, videoconferencing, and the internet.




DO GENETIC COUNSELORS HAVE SPECIALTIES?


Genetic counselors play a very important role in many different areas of medicine. The main specialty areas of clinical genetic counseling include cancer, prenatal, pediatric and adult genetics.

There are many other sub-specialties that include, but are not limited to:

  • Assisted Reproductive Technology (ART)/Infertility Genetics
  • Cardiovascular Genetics
  • Connective Tissue Disorder Genetics
  • Hematology Genetics
  • Metabolic Genetics
  • Neurogenetics
  • Personalized Medicine Genetics​




WHO SHOULD SEE A GENETIC COUNSELOR?


Genetic counseling is appropriate in a variety of different clinical situations.

  • Pregnancy-Related Testing:
    • Carrier screening for a couple or screening for a known genetic condition
    • ​Routine testing of pregnancy to assess risk for chromosomal conditions (such as Down syndrome)
    • For pregnancies at increased risk for a genetic condition due to maternal age, abnormal test results or abnormal findings on ultrasound
  • Diagnosis of a genetic condition in a close family member
  • Family or personal history of cancer, birth defects or other complex disease (such as heart defects)
  • Guidance on how to discuss and share genetic information with family members

For patients, the best way to find a genetic counselor is by talking with your doctor. Genetic counselors can also be located based on name, location and area of specialty by using the National Society of Genetic Counselor's Find A Genetic Counselor tool at http://nsgc.org/page/find-a-gc-search




IS GENETIC COUNSELING COVERED BY HEALTH INSURANCE?


Health insurance will usually pay for genetic testing when it is recommended by a genetic counselor or doctor. It is still important to check with an insurance provider to verify coverage before having genetic testing. Genetic testing policies different from company to company, test to test. As with some other diagnostic or medical tests, patients may be responsible for an out of pocket cost.




HOW CAN I FIND A GENETIC COUNSELOR?


For patients, the best way to find a genetic counselor is by talking with your doctor. The PAGC Find a Genetic Counselor page at http://www.pennsylvaniagc.org/find-a-genetic-counselor.html, has a list of genetics clinics in Pennsylvania and a link to a more comprehensive tool by the National Society of Genetic Counselors.





 

Patient Resources

Professional Resources

NSGC: National Society of Genetic Counselors
http://www.nsgc.org/

ABGC: American Board of Genetic Counseling
http://www.abgc.net/

ACGC: Accreditation Council for Genetic Counseling
http://www.gceducation.org/

American College of Medical Genetics
https://www.acmg.net/

GeneReviews
https://www.ncbi.nlm.nih.gov/books/NBK1116/








 

 

Timeline

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PA Genetic Counselors Licensure Committee
Virginia Speare, PhD, MS, CGC

Mary Delany, MS, CGC

Kathleen Valverde, MS, CGC

Betsy Gettig, MS, CGC

Brenda Finucane, MS, CGC
​Laura Conway, PhD, MS, CGC

Regional Representatives
Maria Baker, PhD, CGC
Kelly Donahue, MS, CGC
Robin Grubs, PhD, CGC
​Gail Martino, MS, CGC

PA Genetic Counseling Licensure

On December 22, 2011, Governor Tom Corbett signed Pennsylvania's genetic counselor licensure bills into law. 

Professional licensure ensures that patients and consumers receive quality genetic counseling services from reliable professionals. It also formally recognizes the level of of expertise and competence achieved by genetic counselors.

Key Provisions of Licensure Bills

  • Provide oversight of genetic counselors in Pennsylvania by the State Board of Medicine

  • Define the title, Genetic Counselor

  • Describe persons who may provide genetic counseling as part of their scope of practice or training without holding a genetic counseling license

  • Define qualifications needed to apply for a license to practice as a Genetic Counselor in Pennsylvania

  • Define the parameters under which an applicant may qualify for a provisional license (e.g. active candidate for the American Board of Genetic Counseling certification exam)

  • Describe the requirements for continuing education to maintain a license

 

Find A Genetic Counselor

If you live in the US or Canada, the National Society of Genetic Counselors (NSGC) "Find a Genetic Counselor Tool" is a great resource to help locate a genetic counselor near you. The website allows you to search based on name, type of genetic counselor (cancer, prenatal, personalized genomic medicine, etc.), distance from where you live and more. 

​If you are not sure you’ve found the right fit, contact one of the counselors listed in your area and they may be able to assist you further.

 

WESTERN


University of Pittsburgh Medical Center (UPMC)
Pittsburgh, PA, US 15213
Prenatal | Cancer | Adult

Children's Hospital of Pittsburgh of UPMC
Department of Medical Genetics
4401 Penn Avenue
Pittsburgh, PA, US 15224
Pediatric | Cardiology | Metabolic | Specialty Disease
 
Allegheny Health Network
Cancer Genetics Program
320 East North Avenue
Pittsburgh, PA, US 15212
Allegheny Health Network
Wexford Health and Wellness Pavilion
12311 Perry Highway
Wexford, PA, US 15090
| Cancer |


Allegheny Perinatal Associates
West Penn Hospital
4815 Liberty Avenue
Pittsburgh, PA, US 15224
| Prenatal |
 
Hemophilia Center of Western Pennsylvania
3636 Boulevard of the Allies
Pittsburgh, PA, US 15213
| Hematology |

CENTRAL

Geisinger Health System 
Geisinger Medical Center
100 N. Academy Avenue
Danville, PA, US 17822
Pediatric | Cancer | Cardiac
 
Geisinger Health System
Geisinger Autism & Developmental Medicine Institute
120 Hamm Drive
Lewisburg, PA, US 17837
Pediatric | Psych Disorders | Research
 
Penn State Milton S. Hershey Medical Center
Penn State Hershey Medical Center Health System
500 University Drive
Hershey, PA, US 17033
Cancer | Pediatric
 
Penn State Hershey Medical Center

High Risk Pregnancy & Reproductive Genetics
35 Hope Drive
Hershey, PA, US 17033
| Prenatal |
 
Wellspan Maternal Fetal Medicine
35 Monument Road
York, PA, US 17403
Prenatal | Cancer

Lancaster General Health- Penn Medicine
Lancaster, PA, US 17604
 Prenatal | Cancer

UPMC Pinnacle - Harrisburg

Medical Genetics
111 S. Front Street
Harrisburg, PA, US 17101
Cancer | Prenatal

The Clinic for Special Children

535 Bunker Hill Road

Strasburg, PA, US 17579

| Pediatric |
 

EASTERN

The Children's Hospital of Philadelphia

Clinical Genetics Center

34th Street and Civic Center Boulevard

Philadelphia, PA, US 19104

Pediatric | Specialty Disease | Research | Cardiology | Neurogenetics

 

Cancer Treatment Centers of America

1331 E. Wyoming Avenue

Philadelphia, PA, US 19124

| Cancer |
 
University of Pennsylvania Telegenetics Program
3930 Chestnut Street
Philadelphia, PA, US 19104
| Cancer |
 
Penn Medicine- Abramson Cancer Center
3400 Civic Center Boulevard
Philadelphia, PA, US 19104
| Cancer |
 
Penn Translational Medicine and Human Genetics
Perelman Center for Advanced Medicine
4400 Civic Center Boulevard
Philadelphia, PA, US 19104
Adult Genetics | Rare Cancer Syndromes 

| Connective Tissue | Cardiology
 
University of Pennsylvania Health System
3400 Spruce Street
Philadelphia, PA, US 19104
| Prenatal |
 
University of Pennsylvania Health System
330 S. Ninth Street
Philadelphia, PA, US 19107
| Neurogenetics |

 

Thomas Jefferson Sidney Kimmel Cancer Network

1015 Chestnut Street

Philadelphia, PA, US 19107

| Cancer |

 

Albert Einstein Medical Center
Genetic Services

5501 Old York Road
Philadelphia, PA, US 19141
Prenatal | Cancer | Cardiology| Ophthalmology |

| Screening for Jewish Diseases |

Temple University Hospital
3401 N Broad Street
Philadelphia, PA, US 19140-5103
| Prenatal |

Main Line Health System

Genetics & Risk Assessment
Bryn Mawr Hospital, Lankenau Medical Center

& Paoli Hospital
Cancer | Cardiology | Prenatal
 
Wills Eye Hospital

Ocular Genetics
840 Walnut Street
Philadelphia, PA, US 19107


Fox Chase Cancer Center
Risk Assessment Program
333 Cottman Avenue
Philadelphia, PA, US 19111
| Cancer |
 
Lehigh Valley Health Network 
1240 S. Cedar Crest Boulevard
Allentown, PA, US 18103
Cancer | Prenatal
 
Phoenixville Hospital - Tower Health

Cancer Risk Assessment

140 Nutt Road

Phoenixville, PA 19460

| Cancer |
 
St Christopher's Hospital for Children
Clinical Genetics
160 E Erie Avenue
Philadelphia, PA, US 19134
| Pediatric |
 
The Cancer Institute of Doylestown Hospital
595 West State Street
Doylestown, PA, US 18901
| Cancer |
 
Abington - Jefferson Health

Asplundh Cancer Pavilion
3941 Commerce Avenue
Willow Grove, PA, US 19090
| Cancer |
 
Chester County Hospital

Cancer Risk Evaluation Program
440 E. Marshall Street
West Chester, PA, US 19380 
| Cancer |
 
St. Luke's University Hospital and Health Network

Family Cancer Risk Evaluation Program
Locations in Allentown and Easton
| Cancer |
 
Holy Redeemer Health System
Hereditary Cancer Risk Evaluation Program
1648 Huntingdon Pike
Meadowbrook, PA, US 19046
| Cancer |