A few weeks ago, while listening to a presentation at the Canadian Association of Genetic Counsellor’s (CAGC) Annual Education Conference in Vancouver, I learned that a newly created genetic counseling clinic had decided to remove the term “genetic counseling” from their clinic name. The term seemed to be confusing potential clients, and it was ultimately determined to be a barrier to getting people in the door.
Just two days earlier, I had sat in a room with the CAGC board of directors while we undertook a brainstorming exercise to try and come up with a simple and straightforward definition of “genetic counselor.” Led by a local PR & communications professional, our goal was to try and get the definition to less than 10 words. After 3 hours of lively discussion and long contemplative silences, we decided we had done the best we could do: our sentence was 17 words long. It was interesting to watch the response of the communications professional throughout the process. Clearly she has hosted similar sessions with countless organizations, but I sensed our challenge was unique. “You really do have quite a dilemma here, don’t you?” she noted more than once.
Communicators with a communication problem
Genetic counseling isn’t simple and genetics isn’t straightforward. Unfortunately, we live in a society that seems hell-bent on fitting genetics and genetic testing into a nice, neat, easy-to-handle box. As a result, we expend a lot of energy trying to describe why genetics is rarely nice, neat and easy-to-handle. We explain ad nauseam how complex, intricate and emotionally and ethically charged genetics can be. So, how do you simplify a message, when the message itself is intended to express the complexity and complicated nature of the subject?
As the chair of the CAGC Media and Communications committee, I have spent the past two years contemplating this question. The irony is not lost on me: communication is one of the most fundamental skills of our profession. We are highly trained to translate complex scientific information into manageable lay-mans terms. Yet, we continue to struggle to effectively communicate who we are to the public and other healthcare providers.
Which brings me back to what we call ourselves: Genetic Counselors. Our name is our first impression, our lasting brand and its descriptive nature should easily and accurately reflect the work that we do. As Sean Hazell argued in his recent guest post, the time is right to make a push for increasing our professional awareness. Given the huge communications challenge we have at hand, I think it is crucial we ensure our name is helping our cause, or at the very least, not hindering it.
As is highlighted by this recent tweet by a genetic counseling student researching GC awareness for her thesis project, it appears we certainly have a lot of work to do:
The name game
I’m sure we have all had the conversation at some point or another. I remember during my training a pretty heated class discussion about whether the name “genetic counselor” is the most appropriate title for our role. As Bob Resta has previously pointed out, the name is not technically correct; as he explains “genetics counselor” is a more grammatically appropriate term. And many argue that we should consider replacing “genetic” with “genomic” to represent a more contemporary reflection of the times. Further, some believe that using the terms “consultant,” “specialist,” or “associate” in place of “counselor” more accurately reflects the broad range of roles we now hold.
While distinct, this subject is intricately tied to the discussion about expanding roles that genetic counselors now hold and will potentially hold in the future (For more on this see Bob Resta’s post: Who the hell do we think we are?).
The way forward
As far as I know there has yet to be a formalized discussion or review of the name “genetic counselor” by our professional organizations, despite the fact that this has been the topic of informal conversation since the establishment of the profession in the 1970’s. I think it is time we officially take a look at this subject. While our professional organizations are accustomed to creating an internal task force to manage this type of task, I think this particular issue may warrant a unique approach.
Specifically, I’d suggest:
- The project would ideally be a collaboration between US, Canadian and potentially international organizations—as creating one united brand would benefit all of us (and creating different names in different countries would likely hurt us).
- We conduct research and engage external stakeholders— patients, physicians and the general public—in the process. If the goal is to ensure our name accurately reflects what we do to the outside world, then the “outside world” should most certainly be at the table.
- We partner with professionals to help with this task. Whether it is a communications consultancy, a naming firm or a branding agency, there are trained professionals dedicated to helping organizations solve these types of problems.
Changing our professional title would be messy and fraught with logistical issues. And I’m aware that at the end of this type of exercise we may learn that “genetic counselor” really is the most appropriate name for us. Alternatively, we may learn that creating one single term to describe the range of work we now do (or may do in the future) is just not feasible. Whatever the case, I think we owe it to ourselves and to future generations of genetic counselors (or whatever they might be called!) to take a good in-depth look at this issue, in order to ensure we are doing everything we can to enable our professional awareness.
I’m keen to see how others feel about the idea of considering a professional name change. Putting logistical issues aside, do you feel the time is right to officially evaluate our professional title? Cast your vote in the poll below.
Do you have an alternative name you favour? I look forward to reading your thoughts and suggestions in the comments section.
The DNA Exchange 
Recognition has been long in coming for our profession. Only now do I meet people who know what genetic counselors are. Changing our names now may interfere with what we’ve been able to accomplish to date. For those who are not happy with the title it’s what you signed up for and if you are unhappy with it maybe you should be pursuing another profession or degree. Our jobs are collaborative with many health professionals but, by the same token, we are not in a profession whereby we can go off to become independent practioners and this is a limiting aspect of what we do. I guess this is similar to the argument many are having about seeking a doctorate where the ‘cons’ outweigh the ‘pros’ but has been a driving force from our younger graduates and colleagues. I am not ready to move forward on a change as I do not see a benefit.
reading this in 2020: sounds like a “If you don’t like it here, go back where you came from”, type of response.
This is such a hard question to contemplate! It is hard for me to look it at it objectively, with so much emotion tied up in that title. From the age of 18, I wanted to become a genetic counselor. While I cognitively understand that what I wanted to do was the work of a genetic counselor, I still have so much time, blood, sweat and tears invested in that job title. Sixteen years later, it would be so hard for me to let that go, even if I understand that it could be better for the profession I the long run.
What about genetic information specialists?
I love this blog. I routinely read thoughtful, progressive and articulate blogposts here. Thank you for asking questions that I, as a new grad, I have been struggling with since I applied to school. As a recent “outsider” to the profession, it certainly took me a while to figure out how to articulate a concise “cocktail party” version of what I do, starting with my job title (it is a work in progress). I like “genetics information specialist”, but I also recognize the limitations to changing one’s job title. I think better articulating what we do to the lay public and to other medical professionals alike is critical to the future of our profession. It’s important to consider the existing barriers that impact referrals, whether that means we change our name or take promote awareness of the professional through other angles. Why do we all have to have the same title if we have just a range of different job responsibilities in different areas of our profession? Thank you for thoughtfully writing about this subject.
I think the title counsellor confuses a lot of clients and many feel that they don’t need “counselling”, and are just expecting genetic information. I think genetic consultant would be more suitable.
I have this experience, too. It can actually be a turn-off for certain patients.
I like this except that it clashes with the physicians. My sense is that we have gone against the norm with the name genetic counsellor in that order…so many (if not all) of us come from a scientific background and would probably feel comfortable with being called a “geneticist”. The “Counselling” part described what we do with our genetic knowledge. So maybe we should swop it a round: “Counselling geneticist”? This gels better with the titles “molecular geneticist”, “cytogeneticist”, “population geneticist”…our work is “genetics”, our speciality is “counselling”? Just as a “genetic nurse” is primarily a nurse, who specialises in genetics. This is the norm with most other professions.
‘geneticist’ would be much much much better!
Great post, Allie. As part of the mission to bring GC more into the public awareness, it is absolutely the right time to consult with communications professionals about not only our title, but the way we brand ourselves (and yes, even clinicians have a brand!). This discussion may also help recognize the roles many of us perform outside the “non-traditional” model.
I know you said to put aside logistics for now, but the thing that struck me most reading your post is this: After all the blood, sweat and tears that have gone into crafting and passing licensure laws in all those US states, defining what a genetic counselor is and who can call themselves such, what legislative maelstrom will be unleashed if genetic counselors decide to stop calling themselves “genetic counselors”? More blood, sweat, and tears through multiple amendment processes? A bit of a legal twist to VDB’s recognition concern above.
Reblogged this on {genes and coffee beans}.
I have always considered myself more and educator than counselor in the traditional sense of the term. Counselor really is someone of a misnomer for what we do,. Given our standard of non-directiveness the term counselor doesn’t reflect to prospective patients what we really achieve to accomplish, and often frightens them.
I am quite proud of being a genetic counsellor, with the understanding I have both clinical human genetics knowledge and skills in psycho-social counselling I can draw on. I am not a ‘genetics information specialist’- I may give a client specialised genetic information, but the skill is giving it in a way they understand and then assisting them process the information so they can use it to make their own decisions. That is the science and the art of genetic counselling.
If the field was simply about giving people results, consenting for tests and interpreting reports, then this overlooks a huge part of why the profession came about in the first place- because genetic information can have serious psycho-social and family dynamic consequences.
If people do not want to identify as a genetic counsellor I would second VDB and ask why they were drawn to the field in the first place?
I understand where both sides are coming from. Changing the name genetic counselor now would invariably lead to immediate confusion and challenges. However, in the long run, it may very well help the general public to understand what we do, and isn’t that ultimately what we hope to achieve with our title? We absolutely are more than just genetic information specialists with our robust psychosocial skills. However, as some have pointed out, the “counselor” of genetic counselor can confuse patients and even deter some from pursuing genetic counseling. Changing our job title would not be a reflection of a change in our role or expertise. We would still possess and advertise our non-directive counseling skills regardless. Couldn’t our counseling abilities be implicit? Our name does not have to be explicit or literal. For example, many other professionals in the “helping fields” of healthcare take pride in the way that they provide information and counseling to patients, but their titles do not include the word “counselor”.
At the same time, genetic counselors are not alone in the world of name confusion. Take for example occupational therapists. Many people in the general public are confused by this title. Nevertheless, many patients attend occupational therapy appointments when referred. Perhaps what it all comes down to is education. Genetic counselors should continue to educate the public and other medical professionals on their role and value, and ideally physicians ideally would briefly explain the reason for referral when sending patients to a genetic counselor.
Allie, thank you for stimulating this conversation. As a veteran GC, it harkens back to discussions that have occurred since the origins of the professsion. What disturbs me in reading these posts is that we continue to be vary widely in describing our profession. Despite our definitions, Boards, Accreditation of training programs, we do not all view our professional selves as having a shared identity. How can we look to outside stakeholders to help us determine the best name for our profession when we have discordant ideas ourselves? The profession is sufficiently established that we need to figure this out!
As a training program director and long time practicioner, I have never viewed my work as a communicator (why not get a master’s degree in health communication?) or strictly an educator (why not get a master’s degree in adult education?) or a counseling psychologist/social worker (why not get a master’s degree in clinical psych or social work?). Rather we blend expertise in clincial genetics wtih counseling to allow us to help clients assimilate new information into their lives that may be threatening, useful, devastating or motivating. We engage in preference based decision-making and so have to engage in therapeutic relationships with our clients to understand their values and beliefs that inform the choices that they make. Even when we make medical recommendations, whether people take up the recommendation and act on it depends in large part on the components of the relationship in which is what made. And for the situations where there are no choices or tests to offer, we witness the pain and suffering, and yes joy that comes with having relatives affected with genetic conditions.
While genetic counseling is evolving and counselors are working in a wide variety of settings, the relational aspects of our work are what distinguish us. If we lose that identity and expertise, I fear the profession will not be regarded as fulfilling an important niche in the personalized medicine. Difficult choices and bad news continue to affect our clients and we need to be there with the skills to help them make life changing decisions and be prepared to live with the consequences. As such, I cannot imagine a name for the profession that drops the essence of our expertise, “counselor.” Although it is admirable and important to continue to debate the issues and increase the public’s familiarity with our work, it is deeply concerning to me after 34 years in the profession we do not have a unified central professional identity, regarless of the wide-ranging ways that it may be applied to our positions in laboratories or industry operations. If we are not genetic COUNSELORS, it is very hard to imagine how we will be essential to the rapidly evolving era of genomic medicine.
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Greatt read thanks
Oh this has some movement! Excited to expound on this point at the NSGC Annual Conference in October in our plenary session “Say my Name, Say My Name” where we question this same premise.
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