By Catherine Wicklund

from GeneWatch 28-1 | Jan-May 2015

When I reflect upon the past 20 years that I have been involved in training genetic counselors, I am aware of how much the genetic counseling profession has evolved and changed. Genetic counselors have been extremely successful transitioning into new specialties and entering into new areas such as neurogenetics, cardiology and psychiatry. Yet I am also aware of the ways in which genetic counselors can continue to grow and develop. I am continually impressed with genetic counselors that push the limits, enter into new spaces, challenge the accepted norms, integrate new service delivery models and continually look at ways to evolve and adapt to the emerging genomic landscape.

Program directors have an immense responsibility to look to the future and prepare graduates for what will come. As we know, predicting the future is not easy, but it is important that genetic counselors must be adaptable, flexible and have a true understanding of what it means to have genomics and the profession be fully integrated into medicine. Keeping this in mind, emphasis on the core genetic counseling skills that apply in any specialty setting must drive the training curriculum.  Graduate programs are moving away from having multiple lectures specifically on individual rare diseases, and instead are moving towards focusing on the genetic core concepts that allow genetic counselors to understand the complex molecular mechanisms behind genetic and genomic conditions. Instead, educators can use particular conditions to serve as examples to illustrate these concepts. Information about a condition can be easily retrieved; it is the ability to critically think, filter large amounts of information and determine what is pertinent to a client that is essential.

Graduate programs also cannot expose our students to every specialty that exists or will exist in the future. The idea that there needs to be a course specific to every specialty is not feasible and is also unrealistic. Each specialty may have its own content area; however, the genetic counseling skills counselors possess apply to each and every setting, clinical and those outside of the clinical setting. Perhaps different skills are emphasized more or less in each setting, but the application is the same. It is the graduate program's duty to teach students how to apply their skills to different content areas, to recognize that they are building their skills on each subsequent rotation and to get them to move from saying "This is my first prenatal rotation, therefore I can't..." to "although this is my first prenatal rotation, I have developed the skills necessary and can apply them in this setting."

As educators and practitioners, let us not forget the art of genetic counseling either: The emphasis on our clients and not on our own agenda; the recognition that information can be empowering, but not for all people; and the fact that there are a variety of ways that people make decisions, and the information we can provide may or may not be a pivotal factor for all of them. It is our responsibility to help clients determine what is relevant for them and be comfortable with our assessment. This will become even more important as we continue to move into genomic medicine. Tailoring counseling sessions to our clients is an integral part of genetic counselor training and we should allow ourselves the option of not covering all information in a single session. It is truly a genetic counselor's ability to counsel their clients, tailor information, communicate effectively, attend to the psychosocial issues in the session, and facilitate decision making that is the foundation of the profession.

As a program director and genetic counselor, I continue to struggle with the term "non-directiveness." I agree with those who advocate moving away from this as a tenet of genetic counseling. While the word itself once served an important purpose, it is now a chain that holds us back from truly embracing our role in the future of genomic medicine. While shared decision making may be a better word to describe what genetic counselors do, genetic counselors must also recognize the tension that exists in helping a client make decisions that are in line with their personal preferences and the need to be sensitive to wise allocation of limited healthcare resources. What role does personal utility play in the current healthcare landscape? While we all can recognize the importance of personal utility and its relationship to clinical utility we must question whether this should be a driver of what healthcare providers offer and to whom? With limited healthcare dollars, our graduates and practicing genetic counselors need to be critical when thinking about whether a genetic test is indicated for each client they counsel and then which one. Genetic counselors must continue to acknowledge the point that we are part of a broader healthcare system with limited resources. It is no longer responsible to offer every test that is available for an indication, and it will become even more important for genetic counselors to continue to do what they do best: determine the best test for that particular patient based on their unique clinical picture. Literature published from large diagnostic laboratories has demonstrated that genetic counselors are essential in determining the most appropriate test to perform for a given clinical indication. We need to have the same level of awareness in our clinical practice since we currently live in an environment that is driven by technology and are expected to make decisions with limited evidence and guidance.  

Finally, what does it mean to have genomics truly integrated into medicine? How can genetic counselors continue to move from collaboration to true integration in the healthcare team? The role of the genetic counselor will continue to change and evolve. It is important that we listen to our healthcare colleagues to determine their needs and respect their knowledge and practice culture. Each setting and situation will be unique and it is our responsibility to adapt to these settings. Healthcare providers will continue to integrate genomics into their practice and genetic counselors are ideal partners to help with implementation. The roles will vary from directly interacting with patients in a physicians' office to consulting with the healthcare team and/or participating in graduate and continuing education for non-genetics healthcare providers. In addition, genetic counselors must also focus on growing the genetic counseling workforce by examining their current training models, facilitating development of new graduate programs, and increasing the number of graduates in established programs. This will require not only efforts from the genetic counseling community, but support from their institutions and non-genetics healthcare providers, and this support will need to extend to a national level.       

While the didactic curriculum of a program can set the stage for change, it is also the other messaging from program directors, clinical supervisors, faculty and the broader healthcare community that influence the future genetic counselors' perspective. An awareness of the messages we emulate is the first step to continued cultural change. Are we being open, adaptable and flexible? Are we using evidence to guide our decisions? Are we being open to new and expanded roles for genetic counselors and to new genetic service delivery models? All professions must ask similar questions. The amount of change we have already adapted to is astounding, and I am confident we will continue to rise to the task.   

Catherine Wicklund, MS, CGC, is Associate Professor in Obstetrics and Gynecology-Clinical Genetics and in the Center for Genetic Medicine at the Northwestern University Feinberg School of Medicine.

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