Prenatal and Pediatric Genetic Counseling: An Overview

Most children are born healthy, with no congenital disabilities, medical problems, or genetic conditions. Some, however, enter the world with physical or neurological differences that lead to developmental or emotional challenges. Others develop a hereditary cancer after birth.

Pediatric genetic counselors apply their practice to such cases. These medical professionals help identify what causes these issues and suggest treatments and resources. They also help families determine whether they or their relatives are at risk of passing on genetic disorders to future children.

By becoming a pediatric genetic counselor, you’ll have a hand in diagnosing genetic conditions in babies, children, and teens. However, that won’t be the focus of your career. Yes, you’ll be a scientist, but you’ll also be supporting people; that’s the counselor part of the job, and it’s a big part. Your primary responsibility will be to translate complicated medical concepts into language lay people can understand.

With your help, frightened families will learn about:

• How genetics and genomics affect health and development
• How they impact specific heritable conditions like Tay-Sachs disease, Li-Fraumeni syndrome, and cystic fibrosis
• How genetic conditions impact children, how they are treated, and the resources available to them

According to the Bureau of Labor Statistics, there are more than 6,000 Certified Genetic Counselors (CGCs) working in the US today, a number that should grow to over 10,000 by 2030. That’s a 66 percent growth rate over the decade (following the previous decade’s 88 percent growth rate). It’s safe to describe this as a fast-growing field.

If you think you might want to join the ranks of pediatric genetic counselors, read on. In this article we’ll cover:

• Where do pediatric genetic counselors work?
• What does a pediatric genetic counselor do?
• Who pediatric genetic counselors work with
• Educational commitment to become a pediatric genetic counselor
• Licensure and accreditation for becoming a pediatric genetic counselor
• What are the advantages of becoming a pediatric genetic counselor?
• Resources for becoming a pediatric genetic counselor

Where do pediatric genetic counselors work?

Genetic counselors in all specialties work in a variety of settings, including:

• Children’s hospitals
• Diagnostics labs
• Medical centers
• Offices of public health organizations
• Pediatric practices

About 25 percent of all genetic counselors work in pediatrics, according to a National Society for Genetic Counselors (NSGC) Professional Status Survey. Other specialty areas include:

• Cancer
• General and adult
• Neurogenetics
• Cardiology
• Metabolic disease
• Infertility
• Pharmacogenetics

Pediatric genetic counselors also work in non-clinical positions, doing research, administration, public education, government work, or content development. Most pediatric genetic counselors, however, work in a clinical setting alongside pediatricians and other specialists to care for children and their families.

What does a pediatric genetic counselor do?

A pediatric genetic counselor helps families understand the causes of genetic conditions, the implications and significance of those conditions, and the ways to access both treatments and coping resources. Your patients won’t always make it easy. They will be scared, because it’s scary when a child is diagnosed with a congenital disability, developmental delay, or a physical condition caused by a genetic disorder. You will be called upon to give not only information but also comfort.

Genetic counselors should be analytical, empathetic, and eloquent. While a pediatric genetic counselor must have a great deal of medical knowledge, this career is all about communication. Think of it as a mashup of science and social work.

Who pediatric genetic counselors work with?

Pediatric genetic counselors work with families of children of all ages, from newborns to teens. People generally seek out pediatric genetic counselors after a child has been diagnosed with an inherited disorder or congenital disability, or when there is a suspected genetic condition.

Other reasons parents will be referred to a pediatric genetic counselor include:

• Abnormal growth
• An abnormal newborn screening
• An autism diagnosis
• Bone dysplasia
• Connective tissue disorders
• Developmental delays
• Heart defects
• Learning disorders
• Neurological disorders
• A physical abnormality
• Visual or hearing problems

After taking a thorough family history and examining a patient’s medical records, a pediatric genetic counselor will:

• Explain how genes shape health
• Discuss specific medical conditions in depth
• Suggest specialized medical care
• Suggest occupational therapy
• Help arrange treatments
• Recommend genetic tests
• Recommend further screenings
• Discuss possible outcomes of future pregnancies

In most cases, becoming a pediatric genetic counselor means working hand in hand with a child’s care team and family. Your role will be non-directive. Unlike doctors who prescribe treatments, you’ll give families information and recommend treatment and support options. The final decisions about what steps to take will rest with your patients and their families.

Educational commitment to become a pediatric genetic counselor

Practicing genetic counselors must have a master’s degree. Before you can earn a Master of Science in genetic counseling, you’ll need a bachelor’s degree.

Master’s degree programs typically don’t require applicants to have pursued a specific major, but it’s common for genetic counseling master’s degree candidates to have studied biology or psychology. Admissions committees want to see that you’ve taken the prerequisite science courses (usually biology, chemistry, organic chemistry, psychology, and statistics). They may require additional courses before you can begin work toward the master’s.

If your goal is to earn a Master of Science in Genetic Counseling, start looking at master’s programs early in your college career. You’ll want to be sure you’re taking the classes you’ll need to apply to graduate schools. Some biology programs are better than others at preparing students to work in healthcare.

Don’t assume you have to attend an on-campus program. Arizona State University, for one, offers an online bachelor’s in biological science program designed to prepare students for careers in healthcare.

Don’t discount the value of volunteering or taking an internship, either. Both will make you a more attractive candidate when you’re applying to graduate programs. Some programs actually require that applicants have logged volunteer hours or internships. Here are some application-boosting options:

• Serve as a peer support counselor at your school
• Visit patients in hospice care
• Work with organizations for people with disabilities
• Volunteer at your local hospital
• Intern or work as an assistant at a genetics center

The American Board of Genetic Counselors (ABGC) accredits 58 Master of Science programs in genetic counseling, but not all of them offer clinical experience in pediatrics. Stanford University offers one of the best programs in the world, with interdisciplinary courses in pediatrics. At the University of California – Irvine and Indiana University – Purdue University – Indianapolis, students can participate in clinical rotations in pediatrics. Be sure the programs you’re applying to will help you gain experience in this specialty.

The most competitive genetic counselor master’s degree programs typically accept fewer than ten students and take two years to complete. Coursework covers genetics, medicine, risk assessment, and lab work, as well as counseling, communication, psychology, and patient education. Clinical training usually begins in the first semester; students may log more than 100 cases during supervised clinical rotations before graduation.

Licensure and accreditation for becoming a pediatric genetic counselor

Nearly all employers require that genetic counselors pass the board certification exam administered by the ABGC and then maintain that certification through continued education. About 20 states require genetic counselors to be licensed, and just as many are in the process of passing legislation that would require working genetic counselors to be licensed.

Requirements for genetic counseling licenses vary from state to state, but in all states that require a license, pediatric genetic counselors need to be ABGC-certified. For the specific licensing requirements in your state, reach out to your state medical board.

What are the advantages of becoming a pediatric genetic counselor?

Earning potential

The median annual earnings for genetic counselors across specialties is $80,000, according the Bureau of Labor Statistics (BLS). A survey by the National Society of Genetic Counselors (NSGC) found that the average salary for a full-time genetic counselor is over $97,000. Genetic counselors can make up to $257,000 annually depending on their experience and specialty area.

ZipRecruiter pegs the average pediatric genetic counselor salary at around $83,000. It’s worth noting that job sites like ZipRecruiter have less reliable data for professions with relatively few practitioners. The BLS and NSGC are probably the most reliable data sources for salary information.

Job market

The BLS predicts that the job market for genetic counselors will grow by 18 percent by 2030, which is much faster than in other professions. This may be because advancements in genetic testing are driving opportunities for genetic counselors in all specialties. NSCG data indicate a much faster growth rate.

Resources for becoming a pediatric genetic counselor

The best resources for aspiring genetic counselors are the genetic counselors themselves. That’s because the best way to determine if a career in pediatric genetic counseling is right for you is to shadow a counselor. Look at the NSGC’s directory of genetic counselors to find a pediatric specialist near you.

You may also be able to find a counselor to shadow by reaching out to the NSGC’s Pediatric & Clinical Genetics special interest group. You’ll get an insider’s look at what a day in the life of a pediatric genetic counselor is really like—and what you see may surprise you.

Some people equate genetic counseling with medical genetics, but counselors spend much of their time helping families cope with the emotional side of medicine. A genetic diagnosis can cause a lot of anxiety, distress, and sadness. That’s especially true in pediatrics. Parents looking for answers and guidance may be equal parts frightened and frazzled.

If you make the choice to become a pediatric genetic counselor, they will turn to you for everything from information to practical support to a shoulder to cry on. By giving them those things, you’ll be giving them the tools they need to better care for their kids, now and in the future.

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