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Genetic counseling: A growing area of opportunity

For scientists who want to use their genetics knowledge to help patients while also potentially keeping a foot in research, genetic counseling can offer uniquely rewarding career opportunities. It is still a young profession, with few Ph.D. holders having made the transition thus far, but it presents exciting options to those who make the leap.

A small but growing profession

Today, the number of genetic counselors remains small across the globe. In 2014, 2400 genetic counselors were employed in the United States, according to the U.S. Bureau of Labor Statistics, and the American Board of Genetic Counseling (ABGC) currently counts more than 4000 certified professionals in the United States and Canada. (The United States was the first country to train genetic counseling professionals, with the introductory class graduating in 1971.) In the United Kingdom, where the job first emerged in the early 1980s, there were just 300 genetic counselors as of 2011, according to a paper produced by a European Society of Human Genetics (ESHG) working group. And the profession is even smaller elsewhere in Europe, the authors of that paper report, with 75 genetic counselors in France; 65 in the Netherlands; 17 in Norway; 15 in Denmark; 10 in Sweden; a handful each in Ireland, Spain, and Switzerland; and none in Germany, Italy, and many other countries.

But several signs bode well for the profession’s future growth. Major research efforts that aim to broaden our understanding of how genetic variations may cause rare inherited disorders and cancer or interact with environmental and lifestyle factors to influence more common, complex diseases, such as the 100,000 Genomes Project in the United Kingdom and the Precision Medicine Initiative in the United States, are underway. Meanwhile, DNA analysis technologies are becoming ever more affordable, with companies offering an increasing number of genetic sequencing and testing services, sometimes directly to consumers. In this evolving landscape, the demand for professionals who can make sense of genetic information and help translate it into clinical practice while navigating the psychological, ethical, and legal pitfalls is likely to grow.

This expansion is already underway in the United States, and the need for these trained professionals will continue growing into the foreseeable future, the U.S. Bureau of Labor Statistics forecasts. It predicts a 29% growth rate for genetic counseling jobs between 2014 and 2024, as compared to an average rate of 7% across all occupations. “So we’re in a position at the moment where people who graduate with genetic counseling [master’s] degrees essentially have their pick of what they would like to do,” says National Society of Genetic Counselors (NSGC) President Jehannine Austin.

Employment opportunities are also on the rise in some parts of Europe. In the United Kingdom, says Sue Kenwrick, a principal genetic counselor at Addenbrooke’s Hospital in Cambridge and chair of the training panel of the Association of Genetic Nurses and Counsellors (AGNC), “my experience … is that referrals are going up rapidly and genetic counseling roles are growing and growing, and there are not enough of us … to meet workforce needs.” (The AGNC also offers a helpful document explaining the genetic counseling career structure in the United Kingdom.) Similarly, the 75 trained professionals currently in France aren’t enough to fill all its vacant positions, says Christophe Cordier, a French genetic counselor who was the first author on the ESHG working group paper. In contrast, the seven counselors in the French-speaking part of Switzerland are sufficient to meet the local demand, which is unlikely to increase until more funding becomes available to create new positions, Cordier adds.

Genetic counseling positions are also becoming available in many different medical areas and work environments. “Genetic counselors can work in multiple specialty areas, including prenatal, cardiovascular disease, cancer, metabolic disease, neurology, pediatrics, infertility, pharmacogenetics, genomic medicine, and others,” according to the 2016 NSGC Professional Status Survey (PSS) of genetic counselors in the United States and Canada. And although genetic counselors have traditionally worked in clinical settings, today they are also finding work in commercial diagnostic laboratories and, to a lesser extent, in nonprofit organizations and government agencies. Genetic counselors’ possible roles are also growing to include new applications and responsibilities. “These include working in administration, research, public and professional education, web content development, public health, laboratory support, public policy, and consulting,” the PSS report says.

Many genetic counselors also have the option to get involved in academic research at one point or another in their career. In the United Kingdom, some do so as research assistants in university labs. In the United States and Canada, they may hold research genetic counselor positions. This title, Austin says, “recognizes the greater autonomy and responsibility that these individuals often have beyond what would traditionally be expected of other types of research employees like a research assistant.” In addition, some genetic counselors conduct research as part of a Ph.D. or a part-time postdoctoral position.

There are also opportunities for genetic counselors to hold higher-ranking academic positions. In fact, 22% of the more than 2000 respondents to the PSS have research, teaching, or clinical faculty appointments—though only 11 of these faculty members are tenure track. Pursuing a tenure-track academic position as a genetic counselor is a challenge, notes Gillian Hooker—who earned a Ph.D. in molecular, cellular, and developmental biology before training and working as a genetic counselor—because many genetic counselors want to continue seeing patients, which can be hard to balance with the duties of a tenure-track professor.

But regardless of title, “there are a lot of really big research questions out there” about patients’ experiences and how to best deliver information to them, Hooker says. “For Ph.D.s who do want to [stay] in research but maybe want to do something that’s more clinical or work more directly with patients, it’s a great time to think about making that move.”

Getting the training

A career in genetic counseling requires a deep understanding of genetics, extensive medical knowledge and clinical experience, and excellent communication and counseling skills. Specific training requirements vary across the world, but in many countries, these skills can—and must—be learned through a 2- to 3-year master’s degree program. However, while job opportunities have expanded, training options remain more limited and admission is quite competitive. Currently, there are 33 accredited genetic counseling master’s programs in the United States and three in Canada, and in 2010, just over 30% of the applicants to these programs were accepted. (Most employers in North America want applicants to win or at least be eligible for ABGC certification, which requires graduating from an accredited program.)

Across the pond, genetic counseling master’s programs can be found in the United Kingdom, France, Spain, Portugal, Romania, the Netherlands, Norway, and Turkey, though there is significant variation in the training they provide. In an attempt to improve and harmonize the provision of both genetic counseling training and services across the continent, the European Board of Medical Genetics has recently put in place a pan-European professional certification system that recognizes six approved programs. And the United Kingdom, which in 1992 became the first in Europe to offer formal training, is overhauling its system with the introduction of a new 3-year master’s program in genomic counseling to begin in September 2016.

The admissions committees for most of these master’s programs want to see evidence that applicants know what they are getting into, so candidates should demonstrate a good understanding of the profession, Austin says. Good places to start are websites like the NSGC's, which has a section that introduces the job and includes videos of simulated counseling sessions, she adds. Hooker suggests getting in touch with master’s program directors and practicing genetic counselors to gather information about the training requirements and what the job is like, which will also help potential applicants develop a sense for whether genetic counseling is really for them.

But nothing replaces the real-life experience of helping people. To even be considered for admission, most programs require that applicants have experience providing one-on-one counseling support or working in a clinical or caring environment. Often, applicants have volunteered with crisis hotlines, which sometimes offer some degree of training, or in domestic abuse shelters, Hooker says. If possible, shadowing genetic counselors is also a good option because it allows aspiring counselors to see if they feel comfortable being with patients and working in a clinical setting, she adds.

Balancing trade-offs

Investing another 2 to 3 years of your life into getting yet another degree may be a potential turn-off for Ph.D. scientists considering the genetic counseling path. But, Austin advises, do “not … be held back by thinking that doing a master’s degree would be taking a step backwards in some way. It’s not. You’re learning an entirely different set of skills.” Obtaining her master’s degree, for example, broadened her scientific knowledge and put it into the context of patient needs, she says. A master’s degree in genetic counseling can also be useful if you ultimately decide to pursue a research career, adds Austin, who is an associate professor of medical genetics and psychiatry at the University of British Columbia, Vancouver, in Canada. She credits her academic success at least in part to the extra training she gained by completing her genetic counseling master’s degree, which allowed her to tackle clinical questions that had previously received little attention.

Another drawback for Ph.D. scientists thinking about a genetic counseling career may be the financial cost of further training, though tuition fees vary across programs and countries. “Once you’ve finished a Ph.D., you don’t want to go back and pay for more school,” says Hooker, who trained at and later spent a couple of years working as the associate program director at The Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Training Program. But, she continues, in the United States at least, “some of the [programs] do have good tuition benefits and various financial deals, so … I wouldn’t rule out [further training] immediately for anyone without exploring the question first.” And in the United Kingdom, the new master’s program will offer salaries and cover trainees’ tuition fees, which will create “more of a level playing field” for anyone who might want to enter the profession, Kenwrick says.

The field is likely to continue evolving as it becomes increasingly possible to interrogate larger tracks of DNA and decipher what genetic variations might mean for rare inherited disorders and common complex diseases alike. As more companies offer genetic and genomic services directly to consumers, the landscape of where and how genetic counseling is done is also likely to undergo some profound changes. All of this presents big adaptation challenges—and opportunities. “The great thing,” Hooker says, “is that it’s a part of our ethos already to respond to technology. … So hopefully the field will continue to grow to meet demand and then at the same time develop new, interesting models to reach more patients.”

Interested in entering the field? Read our final installment for the stories of how Kenwrick, Austin, Hooker, and Cordier each carved their own unique professional paths. And if you missed it, check out the first installment introducing the rewards—and challenges—of a career in genetic counseling. 

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