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.
Not me.
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?
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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).
The DNA Exchange 
Great post, Jess! I definitely struggle with this, and tend to modify my answer based on my mood. On a positive note, in answering the “what do you do?” question I find that I get quick and easy insight into the person I am meeting. Alot of people say something like “oh, neat…” while quickly scanning the room for other people to talk to. Others appreciate my non-conventional answer, and an interesting, educational discussion will follow.
I can identify with this post a lot!!! Initially I used to struggle to answer this question…simply because there is so much to say about what genetic counselors can do….and the profession does tend to invoke some very passionate responses from people…”So you talk about terminations with patient’s”…”So you talk about making the perfect baby with people”….” So you are all about cloning people”…et al.
Typically what I do now is give them a brief idea of my daily routine…trying to stress on the fact that genetic counseling is more a process than a product and engage them in a conversation to give them a perspective of what we can typically offer….not to say that I don’t raise eyebrows every now and then….
I agree, sharing that you’re a genetic counselor (or GC student in my case) can definitely keep you on your toes.
I occasionally find myself in a different situation though, and in the company of friends of friends, or friends of friends’ parents (as was the case with someone a few weeks ago) that may have children with developmental disabilities or other impairments, and are VERY familiar with genetics and genetic counseling. With parents who share their difficult stories of all the clinic-hopping they’ve had to do to narrow down a diagnosis, and who speak of how truly wonderful their children are. With parents who live across the country but have been to the clinics I rotate through and met with the geneticists I work with. I find myself in the position of empathizing with their struggles and wanting to explore their story more, strong opinions or not. But at the same time, I don’t want to cross that personal/professional line of probing more than they’re willing to share in public, as I am not actually taking part in their care.
Here, it’s not so much that I need to explain what I do, but have to think about how much I can incorporate what I do into that social situation, where it, generally, may not be appropriate in mixed company.
Again, more questions… Great post Jessica!
I once told several people at a party that I was a kindergarten teacher after spending the first half of the night in difficult conversations ranging from a woman I met who had a child with hearing loss, to a man I met with two children with severe mental retardation and unexplained leukodystrophy. I just got tired from walking that personal/professional line, like Barry mentioned. Sometimes, when I want to honestly answer the question, but it’s not the appropriate time for a lengthy discussion, I politely, yet somewhat guiltily, tell people that it is a very interesting field and that they should “google” it.
At parties I often tell people I’m a “counselor with a medical group”, and then wait and see if they ask what type. If they ask, then I’ll tell them the details. This seems to help weed out the people who just want to make quick small talk from those that actually might want to know more about the field and what I specifically do. However, a few times I’ve found myself suddenly being told about a person’s family history of alcoholism as they assume that’s the only type of “counselor” that exists. I realize this approach may be lazy and perhaps I’m missing out on engaging someone in a meaningful conversation, but having been a counselor for almost 10 years, I do get tired of the cloning comments. Overall though I do get mostly positive responses from those who want to know more. I’ve also noticed that more people seem to know what it is now, but that could be because I’m getting older and more of my friends are having amnios (:
In the 10+ years I’ve been answering this question it has gotten easier. Both because I’m more comfortable with adjusting my answer to the situation, but also because more people are aware of what we do. It has been exciting to find people who have actually heard of genetic counseling even though they have never seen one themselves. Lately I have had some aquantainces ask if their niece/friend/daughter can contact me because they are interested in the profession!
I do admit that at times I have avoided the situation by saying I’m a nurse or just saying “counselor”, but somehow I don’t feel like myself when I answer that way.
What is genetic counseling anyways?!
You are the most useful at social gatherings and the best for matchmaking. After all if I’m at a party and you’re nearby – you can give me the subtle clues regarding those that may not be the best to socialize with (and of course reproduce with). Let’s face it – everyone carries traits we don’t wish to continue – so in matchmaking perhaps those low set ears and forehead crinkles which appear cute to me but your advice will probably be different.
Think about it – when your out (and nobody is asking about ectodermal BS) – you’ve had a few drinks – your eyes turn to the analytical. What a resource. Party stopper you’re not!
Genetics is a field plagued (and fortunate) to have no clear answers … No one has THE answer – only more questions.
So when those that have been dealt dysfunctional synapses (in their brains) and question what genetic counselors might be or do –
Simply answer: We enlighten individuals on their innate faults, advise those who seek higher knowledge, and fight to preserve all mankind.
I find that I, like many others here, adjust my answer based on where I am and who I am talking to. Often, when I have time to explore the topic with someone, I get very positive responses and often people tell me that the profession sounds very interesting. I’ve even often had people tell me “wow that sounds like heavy stuff.” I say that it is, but then explain how it is rewarding for me. I actually realy like telling people I’m a genetic counselor. I wonder how this might change over the course of several years, as I am still a very new counselor.
I call it “The Countdown”
Them: “So, what do you do?”
Me: “I’m a genetic counselor.”
Pause (3…2…1…)
Them: “What’s a genetic counselor?”
Great post Jessica. I have the added bonus of having to explain the tiny specialized set of diseases I work with as a genetic counselor as well. Depending on my mood and eloquence of the moment, I can really make people eyes glaze over…I get two of Molly’s countdowns, but I do stick my genetic counselor answer (unless I’m being a study coordinator that day).
I would have to say that my favorite, “what do you do?, I’m a genetic counselor” moments occurred when I was out with my fellow SLC grad students in New York on Friday nights. We ALL were genetic counselors and it gave the general appearance (given the concentration in one bar) that genetic counselors were such a common field that everyone should be aware of them.
I recently started a genetic counseling services program in an area that never had it before. I have gotten used to the questioning even from the local docs. It has gotten to the point where when I am with my family they can give my standard answer to “So what is a gc?” verbatim.
I will say that everytime I tell someone what it is I do, I get some very interesting follow-up questions/comments and it ends up being a sometimes strange conversation starter. One women told me that she had a family history of myotonic dystrophy and wanted to know if she should be tested. Another person asked me about autism, immunizations, and diets. Someone else I had met a dinner asked me if I knew about testing to see if he could trace his roots back to see where his family really came from.
Sometimes I wish I could just say what is is I do and then not have to be “on” for the next 20 or so minutes talking about what I know about genetics and X condition…
I can completely agree with Emily, when people ask me what I do, I always answer honestly. But I tend to dread the question because I know where it might lead. It’s not that I don’t enjoy talking about our profession and educating people about the services we provide, but it can be very frustrating when I have to have to same conversation with five people in the same night. I was at a party once where a friend of a friend was asking me if I thought she had Neurofibromatosis and was showing me her cafe-au-lait spots and what she thought was a neurofibroma on her leg! I have since come up with my one-liner about what I do as a prenatal genetic counselor and unfortunately have often found myself leading the conversation in another direction as soon as I finish answering.
Thanks for the interesting post. I must admit, I was a bit surprised by how much your post and most of the comments focus on the challenges and difficulties of discussing our profession socially. While I’ve certainly had those experiences, I’ve also had *many* fantastic conversations that end in the person thinking we genetic counselors have the coolest job ever (and we do!). We get to work at an amazing intersection of medicine, technology, ethics, psychology. What we do is sexy, it’s up and coming, it’s cutting edge, it’s rarely dull. That’s the sort of response I get. Perhaps this is because I live in San Francisco, where it is hip (and common) to have a boundary-pushing career. But I would say I like answering this question and I often enjoy the discussion that follows! I also like being an ambassador for our profession (and our clients!) and these conversations are great opportunities for that.
Back when I was young, single and childless, I worked a weekend/night job at a local bar to make ends meet. As the evening wore on and the beer-goggles became sharper (or perhaps fuzzier), a few male patrons would start to ask me about myself. I found that if I told them about my “real” profession, the conversations quickly ended. If I, however, kept my genetic counseling tendencies to myself….their beer-goggles would remain intact. Your blog reminded me of those days and made me laugh.
Fortunately, I have since found a wonderful man who, despite my first-date concerns that he had Beal syndrome, loves me and my crazy ways. But, I have always been curious about how the social awkwardness that can come with discussing our profession (for some, passion) impacts the single life of a genetic counselor. Aha….another potential research study (kidding).
Fantastic idea, this blog. Keep up the good work. Oh, by the way, my husband (and therefore my kids) don’t have Beal syndrome…..I guess I was just a little over-zealous on that first date. No wonder I was scaring guys away!
I also find it interesting how often total strangers will tell me all about their child/relative with XYZ syndrome upon learning that I am a genetic counselor. Perhaps our patients are as eager to talk to somebody who is familiar with Genetics (and thus does not require a long explanation of what XYZ syndrome is) as we are…
Upon answering this question, I’ve gotten two great responses from obviously well-meaning (but uninformed) individuals: “That’s wonderful, because old people need advocates” (confused “genetic” with “geriatric”) and “So, does that mean you work at a school?” (“guidance counselor” instead of “genetic counselor”). I’m sad to admit that I just smiled and didn’t correct them in either instance!