BY JUSTIN LORENTZ
Justin Lorentz is a genetic counselling student completing his second and final year of his MSc at McGill University. Before entering the world of genetic counselling he studied at the University of Waterloo and in 2010 graduated with a BSc in Molecular Biology and Biotechnology. He is a member of both the NSGC and CAGC and has been actively involved in Genetic Counselling Awareness Week since its infancy. Justin manages a Twitter account under geneharbinger which is dedicated to the field of medical genetics and genomics.
As a genetic counselling student it can be tough trying to stay on top of the seemingly exponential learning curve that marks our graduate program. In an attempt to ride this curve I find myself processing and digesting a lot of information about genetic conditions. The strategy I use to make sure this information is absorbed and retained is somewhat multidimensional in that I gather different forms of media to learn the same thing. For example I may look at Wikipedia (you do it too), I read through books, I browse through the literature, print off pictures on Google images, and I have even been known to listen to podcasts.
One day during class, the disorders under the umbrella of Limb Girdle Muscular Dystrophy (LGMD) came up and our lecturer mentioned how a patient’s gait, among many other things, can act as a clue in making a diagnosis. The lecturer was not willing to demonstrate a gait characteristic of someone with LGMD and, after mentally sifting through my usual research schema; I realized I would need to get creative if I was going to actually see this gait.
That night I went home and I typed “Limb Girdle Muscular Dystrophy” into the YouTube search bar and to my surprise I got plenty of results. The main contributor was a user named John71377 AKA John Graybill, a 34 year-old man who has LGMD type 2A. When I visited his YouTube channel here my interest was in his gait, but after watching the first 30 seconds of a video I didn’t care about that anymore. John showed me a little about his life that I would never see in a clinic or read in a textbook. As I sifted through over 30 videos of him demonstrating how he gets out of bed, goes up and down stairs, and how he stands up from a seat, I realized I would never forget about LGMD. To this day I see John when I think of this condition.
I quickly realized that John’s goal in making his videos was not to show genetic counselling students how he walks; instead it was to help other people with muscular dystrophies like LGMD by sharing tips and advice about how he has overcome his limitations. In addition to his videos he advertises his website he created to raise awareness about LGMD, particularly type 2A. After looking at the comments on his channel, and then watching him on a PBS special I am confident he has been successful.
After “meeting” John, I wanted to see if there were other people who have shared their life with a genetic condition on YouTube. In a matter of seconds I “met” Jim who has myotonia congenita. He posted this video with the intention of educating the public about his condition. He shows how his body reacts when he moves rapidly and he explains how he can overcome the limitations of his condition through stretching. Then I “met” Elliot Adler, a 10 year old boy who has Charcot-Marie Tooth (CMT). With the help of his mom, he created this video raising awareness for CMT. He says that the more people who know about his feet means the better the chances of finding a cure.
Although the intentions of these videos are different, I saw similarities when I looked at the comments written about them. From what I have seen, there have always been comments from other YouTube members who could personally relate to the videos because they had a friend or relative with the same condition or because they have it themselves. Almost every comment provided support, and sometimes members would even network and share email addresses.
It is important to note that the people watching these videos are not just those who can personally relate to them. Furthermore, it is not just people with genetic conditions that are making these videos. Patient organizations such as the Canadian SADS Foundation have harnessed the power of YouTube and create videos like this one to educate the general population, spread awareness, and raise money for research.
YouTube is being used everyday as an educational tool for patient organizations, for patients with genetic conditions, and for the occasional medical genetics practitioner. It might be time for the genetic counselling community to begin thinking about whether there is a place for YouTube in their practice. YouTube videos made by organizations pose many of the same benefits and limitations as websites made by organizations. Personal YouTube videos in many ways are like personal websites, and similar disclaimers may apply if they were ever to come up in a session. But like how reading a book provides a different experience than watching a movie; viewing a website on LGMD will provide an experience that cannot be compared to seeing someone with LGMD move through their house. YouTube can be a powerful resource in this field (for better or for worse).
What information does YouTube have on your field of genetic counselling? It might be good to check it out. I bet some of your patients have done just that already.