HER NATURE HIS NURTURE

a his & hers weblog of worlds apart

Genetic Counsellors and Genomics

Where do we belong?

Earlier this month the Canadian Institute for Advanced Research (CIFAR) hosted an open forum panel discussion entitled “Personalized Medicine: Are we Ready?” The 7 person panel was made up of a diverse group of scientists, physicians and a couple of direct-to-consumer company representatives. In addition, Cheryl Shuman, a genetic counsellor and the director of the University of Toronto Genetic Counselling program was included. Not only did I anticipate an interesting debate, but I was looking forward to hearing how the GC perspective might stand out against the rest.

In the end, I was disappointed. The debate quickly descended into (as it inevitably does) the scientists vs. the capitalists. The overall sentiment of the evening was (as it always is) that 1) personalized medicine is “not yet ready for prime time” and 2) DTC companies are selling tests that lack clinical validity and utility.

I was left wondering how genetic counsellors might fit into the world of personalized medicine. Interestingly, Gene Sherpas has been pondering the same thing. And according to him, the outlook is bleak. He cites GC’s lack of medical training as a major barrier, and believes that training nurses in genetics is a more feasible option. He also chastises GCs for providing medical advice without physician supervision. As a young genetic counsellor with a strong interest in personal genomics, I find these comments disturbing. Some of my thoughts on the issue:

  1. The advent of personalized medicine will require an overhaul of GC training programs. Our programs were initially developed to fill a void in the area of clinical genetics, and our classroom training and clinical rotations reflect this purpose. One of my colleagues did her thesis on the possibility of adding a component of specialization to GC training programs, perhaps in the form of fellowship. I think she’s on to something.
  2. There is a huge potential for GCs to have a role beyond that of patient interaction. We have first-hand knowledge of the implications that genetic testing can have on people, their families, their social network. This knowledge can and should be used to inform discourse between healthcare providers, administrators and legislators about the impact and issues surrounding genomic medicine.
  3. Within the GC community there is tension between those GCs who work directly with physicians vs. those that don’t. As eloquently described by the anonymous GC commenter on the Gene Sherpas post, this issue is rooted in our current lack of regulation. This issue is real, and certainly not new.
  4. Genetic counselors need to get off the listserv, and get on the web! There is a lot to be said for the “public thinking” model that blogs and open forum sites allow for. We need to engage our allies and our critics in professional debates, in order to adequately adapt and stay relevant in this ever-changing environment.
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5 comments on “Genetic Counsellors and Genomics

  1. Steven Murphy MD
    November 3, 2008

    Allie,
    Excellent points. You do have a role here. In fact the point you raise about filling a void is perfect. You fill the void left by geneticists when they abandoned fields such as prenatal and cancer genetics in favor for something they were more comfortable with……pediatrics……until we have more Internal Medicine and OB/Gyn geneticists we will continue to have that void. You fill a great spot. But you did not have 2 years of medical school clinical training or 3-4 years of residency training in addition to 2 years of genetic fellowship training. That is 7-8 years of clinical training…..to have a CGC disrespect that and think that they could “do better” is sad…yet that is what I see from some egomaniacal CGCs who think they are “smarter” than these clinicians…..

    We are synergistic and our maximum potential is in working together not alone…All I ask is that CGCs remember all the years that a physician has trained for clinical work.

    -Steve
    http://www.thegenesherpa.blogspot.com

  2. alliejanson
    November 4, 2008

    Steve,

    Your point is well taken. And as I mention above, you are not alone in this thinking. Anecdotally, I know that there is tension between GCs that recognize their limitations and those they step outside the purview of their training. This is an issue that requires the involvement of regulatory bodies and is certainly beyond me and my thoughts about how GCs (who stick within their boundaries) might be of benefit in the world of personalized medicine.

    So, I guess my question for you is:

    The above issue aside, do you see a role for
    those GCs who recognize their limited clinical training AND are interested in working with a physician within the realm of personalized medicine? If so, how do you envision this role?

    OR do you think that any GC with an interest in this area will require additional clinical training?

  3. Steven Murphy MD
    November 18, 2008

    Yes…
    This role will be in collaboration with PMDs.
    -Steve

  4. N/A
    January 17, 2009

    I love the subject of human genetics. I wanted to become a GC for several years but I decided to become a PA instead because of the lack of clinical training in the GC profession.

    If GCs want more respect and a bigger role in the healthcare field, they need to add more clinical training. Add an additional year to take courses in the medical model (history and physical, pharmacology, physiology, Anatomy, etc) and add a fellowship opportunity. Otherwise GCs will continue to just draw a family history tree, give test results, and provide risks for developing a condition or passing on a condition to a child.

    I know of a few other people who have decided not to go the GC route as well because of the limited scope that GCs have.

    I would have loved to have been a GC, but I didn’t want to be so limited in the clinical setting.

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    July 4, 2014

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