I have heard some genetic counselors say they have ‘given up’ on telling those they meet at social events that they are genetic counselors in the interest of avoiding long, tedious, and potentially polarizing Q + A sessions with their fellow conversationalist. One GC told me she simply says she is a nurse.
Although I mentally brace myself for the potential complicated discussion, I am always more interested in hearing what the other’s questions and reactions will be —
“So, you make blue eyed babies?”
“You tell people to get their breasts removed!?!”
“My friend was told her baby had Down Syndrome and he is now in a gifted child program.”
As I once read, “All patients have genes!” Since we are all potential patients, bringing up the topic of genetic counseling with acquaintances, family, or even fellow subway riders can really keep you on your toes.
At my last birthday party in a lower east side (NYC) location, I was told by a stranger who knew my profession:
“My cousin has ectodermal dysplasia”
Heavy stuff. Especially at 2am with Biggy playing in the background.
It is not unusual for others to inquire about one’s profession. But, the difference is that genetic counseling conjures up difficult topics for people – underlying most of the questions are ethical and moral considerations related to the definition of what it means to be human.
Are those typical party topics? No, but it does not mean they should be avoided.
In fact, they should really be encouraged.
So, how do we GCs respond? This conjures up 2 main questions for me:
1. Do we wear our professional genetic counselor hat at all times with a non-directive counselor role, limiting the exposure of possible biases and preferences? Or, do we share some of our opinions based in our experiences and knowledge? Perhaps these are not mutually exclusive, but striking the balance might very well be an art.
Over time and with exposure, every genetic counselor develops strong opinions, cases for which she/he has strong feelings. See below –
The cancer patient who has >66% chance for a BRCA mutation who declines both treatment and genetic testing.
The patient who continues a pregnancy affected with Trisomy 18.
The patient who terminates a pregnancy affected with Trisomy 18.
2. What is genetic counseling anyways?! I am sure we all have our media clip definition to share with our inquisitive social audiences, but sometimes I find myself wanting to gear my answer towards a particular person’s age, gender, background, etc. This inevitably leads to complicated discussions. There is certainly a spectrum of definitions regarding what genetic counseling is from the more thorough to the most simple (first hit in google). This is part of what this blog is about.
Genetics is a field plagued (and fortunate) to have no clear answers due to the mix of science, culture, religion, ethics, disease, stigma, psychology, family dynamics and relationships, guilt…
How to encapsulate all that in cocktail conversation without being a party stopper while still being true to my emotions and profession sometimes eludes me…
I am cognizant that I sure don’t know what an ‘associate assistant of regional internal marketing and financial affairs’ [insert any business position here] does. Although I doubt such a professional feels as much angst and pressure to perform when asked,”So, what do you do?
Please share your thoughts regarding why engaging in discussion regarding our profession can be challenging. I also encourage everyone to share their humorous and/difficult social genetics stories (with respect for privacy of course).