Tag Archives: genetic

Guest Post: Using your Skills Outside the GC Session

By Leslie Ordal

Leslie Ordal writes and works in continuing medical education in Ottawa. A graduate of Wellesley College, she is in the process of making a career change to genetic counselling. She maintains the Twitter account GenCounsNews, devoted exclusively to the topic of genetic counselling, and is also active in community health education activities.

Having spent the last year and a half preparing to apply to a graduate program for genetic counseling, I’ve read with interest the entries on this blog about “non-traditional” roles for genetic counselors. My own aspirations in the field fall more on the traditional side, but coming from a varied academic and professional background it’s interesting to see how genetic counselors are applying their skills outside of the textbook definition.

I work in health care and have observed a growing movement to improve communication between providers and patients. I’ve been to a few informational sessions about the need to communicate in plain language, or take into account an individual’s background and beliefs when advising them about their health. It occurred to me that the ideal person to coordinate this kind of education would be a genetic counselor. GCs are able to tailor their information to a patient’s individual level of knowledge, know how to discuss sensitive topics in an unbiased way, and have a keen understanding of the impact of even seemingly minor health care decisions on people’s lives. These skills are useful beyond the field of genetics: nurses giving discharge orders to patients need to be able to simplify their instructions appropriately, for example, while physicians may benefit from understanding the cultural reasons behind a patient’s refusal to answer particular questions or undergo a certain procedure. All health care providers can improve their care by understanding how a poorly phrased diagnosis or comment about a patient’s condition may have a major effect on that patient’s life and well-being.

A genetic counselor would be well-equipped to share this kind of knowledge and insight with other health care professionals. This kind of work, while not a career in and of itself, seems like an interesting “side project” for the genetic counselor who wants to expand the field they work in and at the same time raise awareness of their own profession.

Have you had any experiences where you used your genetic counseling skills outside your field? If so, please comment–I’d be interested to hear about them.

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Does History Shape Society’s Attitude Towards Genetics?

I visited D.C. as an undergraduate student and spent a majority of my time wandering around various Smithsonian museums.  I got to see Dorothy’s ruby slippers, Kermit the frog, and Apollo 11 artifacts.  There was one exhibit that left a lasting impression on me which was the Deadly Medicine:  Creating The Master Race exhibit at the Holocaust museum.

DEADLY MEDICINE: CREATING THE MASTER RACE

From 1933 to 1945, Nazi Germany carried out a campaign to “cleanse” German society of individuals viewed as biological threats to the nation’s “health.” Enlisting the help of physicians and medically trained geneticists, psychiatrists, and anthropologists, the Nazis developed racial health policies that began with the mass sterilization of
“genetically diseased” persons and ended with the near annihilation of European Jewry.

To relate this history, the United States Holocaust Memorial Museum has assembled objects, photographs, documents, and historic film footage from European and American collections and presents them in settings evoking medical and scientific environments. Deadly Medicine: Creating the Master Race provokes reflection on the continuing attraction of biological utopias that promote the possibility of human perfection. From the early twentieth-century international eugenics movements to present-day dreams of eliminating inherited disabilities
through genetic manipulation, the issues remain timely.”  (http://www.ushmm.org/museum/exhibit/traveling/details/index.php?type=current&content=deadly_medicine)

The Genetics Revolution seems to focus so much on the future that we forget about the past.  Who are we to say the past does not affect us on some level?

Eugenics is, unfortunately, real.  Is this why so many people are concerned about The Genetics Revolution?

I know eugenics is a very sensitive subject but that doesn’t mean we should ignore it.   I think it is important for us to explore the history of genetics and the impact it has had on society.  I don’t know about you, but I have met several people who immediately assume genetic counselors encourage some form of eugenics.

Do you ever feel like in a sense the past is holding us back in terms of the public fully accepting The Genetics Revolution?

The reason why I’m bringing this up is because this exhibit will be visiting my town for a few months.  I hope to do a follow-up post about it from the perspective of a genetic counselor.  I hadn’t even started to apply to genetic counseling programs when I first saw this exhibit.

I also see this as an opportunity to educate the public about misconceptions that might be out there about genetic counseling.  There has been a lot of buzz about this exhibit.  I’m open to any suggestions as to how I can use this exhibit as a platform to educate the public and to increase awareness in genetics.

Thoughts?  Suggestions?  Comments?

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Filed under Kelly Rogel

Can You Feel Anything When I Do This?

Despite 26 years as a genetic counselor, people are often a mystery to me. Here I present a vignette that explores my inner thoughts and insecurities that can arise during a counseling session. It is drawn from no one specific patient. It may not be real but it is true.

***

“Have your doctors told you much about what I do or why genetic testing may be helpful?”

 

Playing her emotions close to the vest, eyes unreadable, a near-smile frozen on the face. She looks like she is posing for a photo she doesn’t really want to be in. Mastectomy, lots of chemotherapy; this isn’t going to be a walk in the park. She’s got to be feeling something.

***

What does she do for a living? Corporate VP with an international finance company. I wouldn’t understand her job even if she explained it to me. Every week she probably makes multi-million dollar decisions without so much as a second thought. But cancer is one situation you can’t control with a spreadsheet. Is it too early to reach into my bag of counseling tricks? Emotions are a tight rope. Wrong step at the wrong time, and the session goes into free-fall, with no safety net below. Maybe she thinks this is a waste of her time and just wants to get her blood drawn and get on with it already. Or maybe all those specialists scared the bejeezuz out of her, with their slick clinical lingo and impressive statistics. I sound just like them with my talk of oophorectomy and cancer risks. Who can grasp the real meaning of a lifetime risk anyway? Maybe I need to switch gears.

“You’ve met with lots of specialists this week. I bet you’ve heard more information than you bargained for.”

Well, she stopped taking notes. Maybe I can work her family into that opening.

“Have you shared any of this information with your daughters?”

A solitary tear, held in place by sheer will. Okay, now where do I go with this?

 

Short pause, then she replies “Tell me again the chance of this cancer coming back.”

She stopped that tear dead in its duct. She’s more comfortable when I play Medical Expert. Not quite ready to let the emotions spill over the dam, but it’s a start. I can play along with being The Great Authority for a while. She could be sizing me up to see if I am smart enough to earn her confidence and respect; nothing wrong with that.

***

“You know, you’re going to live, and probably for a long time. It will be rough going for a while, but you will come out the other side. You have good doctors and a great family. And I am guessing that you are tougher than your cancer.”

A hint of a smile, then a long pause. She’s struggling with this, not quite sure what to make of it. I hope I didn’t blow it.

 

“Will my insurance company cover the test? I forgot to call and check.”

That fell flat. I may as well just go along with answering her questions. Maybe it allows her some sense of control.

***

60 minutes, session over, and I am still unable to figure her out or if I did much good for her. She pauses at the door, and half turns to face me, tears starting to undo the make-up.

 

“Thank you,” she says quietly, ”You were very kind.”

Then she is gone.

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Welcome to The DNA Exchange

Picture 5

Image credit: Walter Parenteau (click on image for link to original photo)

Over the past year or so, I’ve gotten to “know” the  incredibly vibrant  and active online genetics blogging community. These bloggers (made up of researchers, medical students, geneticists etc) are not only a great resource for up-to-date information, but also provide unique perspective on the implications of scientific advances on health care providers, patients and society.

The idea behind The DNA Exchange is to allow GCs to be more proactive, rather than reactive, with respect to public discourse on the web. The hope is that this centralized forum will encourage GCs to get involved and share their individual point of view.

In one of our profession’s most prominent teaching texts, the authors write:

Being a member of a relatively small profession that deals with issues at the cutting edge of science, medicine and ethics requires a commitment to continued growth and to the assumption of responsibility for helping other health professionals, policy makers, and clients understand genetics and its implications.

A Guide to Genetic Counseling (1998), Chapter 1, p. 18

The web provides us with an excellent opportunity to grow and contribute to a broader discussion. And I’d argue that we have as much to learn from other professionals and stakeholders as they do from us. Let the sharing begin.

(photo credit)

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Filed under Allie Janson Hazell