It Was Bound To Happen Amway or Another

amwayglobalearthquakes

Remember Edward R. Murrow?  No?  Me neither.  How about Walter Cronkite?  I met him once in an elevator in 1980 (if by “met” you mean that I mistook him for the elevator man and ordered the most famous news anchor of the day to take me to the fifth floor.  I recognized him by the familiar resonance of his voice as he replied, “Well, alright, young lady,” and we continued on together for the rest of the ride in an amiable silence, him smiling benignly, me wishing there was somewhere to hide in an elevator).

But I digress.  Here’s the point: for those of us ancient enough to remember, there was a time when everyone turned to a Walter Cronkite for the news.  The news guys didn’t always get it right, but truth was what they were aiming for.  Then somebody got the idea to give the news a slant — let’s not descend into name-calling here but SOMEBODY (rhymes with pox) got the idea to make news a little more exciting for their audience.  The old news was boring – while the new news was provocative and inflammatory, a veritable cocktail of rhetoric and innuendo with the occasional fact thrown in like a garnish.  Fact: the olive in the martini glass of new news.

And it worked.  The public liked the new news, or at least they liked it better than the old news, which was bad news for the purveyors of real news (although ironically it worked out very well for the champions of fake news).  Soon, everybody was busy finding an angle, so that now instead of that one boring half an hour in the classroom, we have twenty-four hours a day of happy hour, with everyone shouting to be heard over the noise in the bar.  Five o’clock somewhere; time for a drink!

But I digress.  What I meant to say was this: today I read in a press release that Amway Global has entered into a partnership with Interleukin Genetics to sell their trademarked Inherent Health line of genetic tests, including the new Weight Management Genetic Test and the soon-to-be released Bone Health Genetic Test, which measures liability for osteoporosis.  How excellent is that?

Of course, they’re not entirely sure that it actually measures liability for osteoporosis.  Sure, they stand by their claim that it will improve peoples’ health – but the test is not even due out for another month, so it is far too soon to have any idea if it works and besides, according to the press release, claims like this are not promises but “forward-looking statements.”  When an organization is trying so hard to be forward-looking, it is hardly fair to expect them to be right at the same time, since predicting the future is a dicey business (as people are likely to discover, using the Inherent Health line of genetic tests).  And the company tells you right up front (if by “up front” you mean buried in the small print at the end): “Because such statements include risks and uncertainties, actual results may differ materially from those expressed or implied by such forward-looking statements.”

Naturally, Amway “disclaims any obligation or intention to update these forward-looking statements.”  Of course not.  Because they might not launch the test at all, or the technology might become obsolete, or the whole thing might turn out to be complete and utter bulls**t.  But how boring is all that fact-checking stuff?  And don’t they already know what their customers want to hear?

Here’s a backwards-looking statement I would like to make: I think I’ve seen this movie before.  It’s called The Invention of Lying and it stars Bill O’Reilly and Lou Dobbs and Keith Olbermann.  The critics hated it, but it has a happy ending – eventually, everybody hears only what they want to hear, and if by mistake they stumble onto information that contradicts their preconceptions, they are free to disregard it entirely – because all statements include risks and uncertainties, and actual results may differ materially.

Scream and yell and howl at the moon, but Glen Beck is not going off the air until his ratings drop and Amway is going to sell genetic tests if people will buy 66waltercronkitethem.  Where does that leave genetic counselors?  Shall we agree to be the PBS news of genetic testing: a sober, sensible broadcast admired by many and watched by few?  There are worse things in life one could be than Jim Lehrer.  I think Walter Cronkite, were he still alive and assuming he had gotten over the incident in the elevator, would be proud.

Or, we could all go work for Amway… five o’clock somewhere; time for a drink!

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The Small Satori of Genetic Counseling

Let’s face it – lots of genetic counseling is repetitious. Most of us have subconsciously scripted our own version of a counseling session that we follow more rigidly than we like to admit, the inevitable outcome of seeing hundreds of fairly similar patients a year, year in and year out. On particularly busy days, you may even  lose track of where you were  in the session when a patient asks a tangential question or there is a knock on your door. It can be a slog, a Groundhog Day-like re-playing of the same film with only minor variations.

This repetition stems to some extent from the educational component of genetic counseling, the need to impart complicated biomedical information with the ultimate goal of helping patients making good decisions about their medical care and lives. We want to combine knowledge with emotional guidance so patients can gain wisdom and personal insight. Sometimes, though, as you watch dazed patients stumble out of your office, you start to wonder just how effective or helpful you have been.

On the other hand, there is a zen-like quality to constant repetition of the same act. By focusing strictly on the task at hand you master it through endless repetition. You eventually perform without thinking of the mechanics of performing, and achieve a state of mastery without thought .  Chop that wood, carry that water. Brush left, brush right, Karate Kid. This frees the mind, making it receptive to sudden, unanticipated moments of enlightenment – satori, in the language of Zen. With a free mind, you can subconsciously pick up cues from patients’ words, expressions, and postures, and suddenly, you see into the heart and soul of your patient – Wumen’s thunderclap out of a clear blue sky. Ah –  this cancer patient is angry because his mother walked out on the family when his father was diagnosed with terminal colon cancer, not because I kept them waiting 15 minutes for the appointment. Look – all the worry left her face when I said she really did not need to have an amniocentesis; she just needed someone in authority to tell her that it was a good decision.

What we really want, though, is for our patients to also have these small satori,  those magical moments when their faces light up, their eyes open wide, and everything falls into place for them.  These are some of the most rewarding and exciting moments of genetic counseling. Yes, yes, of course – I must tell my sister about my BRCA results to make sure she does not get ovarian cancer. She’s my sister ; I love her even if we are always bickering. You know – I just realized I do not need to have an amniocentesis; for some crazy reason, I was going to do it for my friends.

Repetition is critical to our professional development. In quiet, not-quite-perceptible ways, it builds our confidence, enhances our ability to understand our patients on a deep level, and plows the soil for the seeds of personal growth. For the compassionate bodhisattvas among us – like Jon Weil, June Peters, Luba Djurdjinovic and a few others – thunderclaps are second nature. For the rest of us – well, it’s back to chopping wood and carrying water.

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How To Work With Interpreters

Jessica’s most recent post, Interpretation Declined, struck a chord with me.  She brings up a very good topic and it was refreshing for me to see it from a different perspective. I wanted to expand on this topic some more since I have utilized interpreters as both a genetic counselor and as a patient.

Jessica writes about her experience as a genetic counselor who works with interpreters.  I’m writing from the other side of the fence; the patient’s experience using interpreters.  I hope some of you find this helpful or this serves as a refresher if nothing else.

The top 5 things I wish health care providers knew when working with interpreters.

Note:  I’m deaf myself and have worked with numerous interpreters in various settings.

1)    Make the situation less stressful as possible for everyone. It’s always stressful going to the doctor’s office but it is even more stressful not knowing if a qualified interpreter will be available for an appointment or if a medical provider knows how to use an interpreter.

I, personally, worry more about if an interpreter will be present at my doctor appointments than the actual appointment or not.  I greatly appreciate it when the doctor’s office calls me prior to my appointment to let me know if an interpreter has been scheduled.  This reduces my stress level and shows that the doctor’s office cares about accessibility and I’m a lot more likely to focus on my health itself than communication barriers that may arise.

When possible, genetic counselors should try to contact their patient in advance notifying them that an interpreter will be available even if it’s only an hour prior to the appointment.

This makes a big difference because it shows you respect your patients and shows them you want your patients to have equal access to information.

2)    Remember the interpreter is not there just for the patient, he/she is there for you also. For the longest time I felt like I was a burden whenever I needed an interpreter which in turn made me want to avoid going to the doctor.  Health care providers tended to make me feel like it was my fault I needed an interpreter because I couldn’t understand spoken English.

I read something a couple of years ago that made me realize that an interpreter is there not just for me but for the health care provider also.  I do not speak the same language my health care provider speaks and my health care provider does not speak the same language I do.  Hence we both need an interpreter to understand each other.

A suggestion for genetic counselors would be to remember it is not only the patient who needs an interpreter, YOU need an interpreter too.  Do not make the patient feel like he/she is a burden by making them feel like you had to go out of your way to work with an interpreter.

3)    Preparation. As genetic counselors we know the importance of case preparation prior to an appointment.  Don’t forget to prepare interpreters also.

When possible take 5 minutes prior to an appointment to review the case with the interpreter.  Mention the patient’s name because it is possible the interpreter may already know the patient from outside a medicine setting which could lead to awkward situations for the patient and possibly a bias in the translation.

Give a brief review of the case-particularly genetic terminology.   This gives you the chance to bring up any sensitive issues that an interpreter may say he/she cannot interpret without a bias.  A review of uncommonly used terminology helps ensure information gets translated correctly.

4)    Medical interpreters. My best health care experiences have involved medical interpreters.  I know many of you use telephone interpreters, but try and check as if your scheduled interpreter has any medical training.

If you work with a specific interpreting agency on a daily basis contact the company and ask if you can send some information to them that can be reviewed with interpreters.  I have found as a genetic counselor that it makes a huge difference when I provide an interpreter with a list of commonly used genetic terms with brief definitions.

5)    Know your rights and how to work with an interpreter. If you do not feel comfortable using a specific interpreter, request a different one.   You are entitled to working with a qualified interpreter.  Become familiar with the type of interpreter services your hospital works with.  How are those interpreters hired?  Do they have any medicine background?  What kind of certifications do they have?  Have they been trained to be neutral?  What are their qualifications?

Have high standards for interpreters you work with and develop work relationships with them.  Keep the communication line between you and interpreters open.

Don’t forget, you are speaking to your patient and not the interpreter.  Maintain eye contact with your patient and avoid using phrases such as “tell her,” “what does he think,” etc.

Relax and be comfortable.  🙂

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Interpretation, Declined.

The important and challenging task for the language interpreter is to find a balance between active and passive involvement, understanding what is happening while attempting to interpret, word for word, what is said.globe

Many interpreters accomplish this fairly well and I do not often believe they are actually influencing my patients in any particular direction for or against prenatal testing, terminations, cancer testing, etc. But, recently, an interpreter declined continuing because my French speaking patient from Africa and I were discussing abortion. The interpreter hung up, “exercising her right to decline continuing”.

After 30 minutes of rapport had been built, everything went into limbo for 10 minutes as I worked to find a new interpreter. I do not know exactly what the patient was thinking in those 10 minutes, but my thoughts went something like this…

“What kind of question did the patient ask that finally made the interpreter uncomfortable? Does my patient feel judged by this 3rd party who is probably sitting in her cozy ‘interpreter chair’?! I am angry! Don’t they screen for personal beliefs when they sign up people up for this service?! I am going to black list this interpreter from ob/gyn services…Wait, I have to focus on the patient’s reaction..”

I composed myself and apologized profusely to the patient. She was gracious and reiterated her question to our new interpreter. I heard, “Would the hospital be supportive of a decision to terminate a pregnancy with Down Syndrome?”

Clearly, the interpreter would not be.

But the interpreter is not actually a part of the hospital. That is known to me, but not necessarily to the patient. We spent some time clarifying the mixed signals the patient was receiving. The patient eventually decided to decline further prenatal screening. Did the interpreter influence her decision?

I could not survive my prodigiously diverse hospital setting without the aide of the language line. I have been suspicious that some interpreters are not translating word for word. I even hang up if I am uncomfortable with the interpreter’s style. However, this scenario forced me to further question whether or not the service actually influences the patient’s decision making.

A conference this weekend regarding medical decision-making published an abstract about this issue and the authors say:

Common challenges were additions, omissions and modifications in terminology resulting in miscommunication of clinical and cultural concepts, and ethical concerns during conflicting values between providers, interpreters and patients.”

How do we overcome this? Can we? If we start using computers to translate for patients and providers, we would lose some of the essential humanness that great interpreters provide i.e. using a more compassionate voice when the room is full of tears, recognizing when a patient is lost and asking to rephrase.

As a genetic counselor, my primary goal is to facilitate informed decisions rooted in self-understanding.
This often requires a non-directive and supportive environment. Anyone who assists us must have this goal as well. I implore interpretation providers to assess your beliefs before becoming involved in cases that might be morally offensive to you.

There is little worse than negative judgment when you are most vulnerable. Ask the patients. Ask yourself.

Please share your thoughts about the influence of language providers on your patients. I am reminded of “The Spirit Catches You and You Fall Down”. Maybe I should revisit this book, other suggestions?

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“Designer Genes”

I posted this on herNaturehisNurture a couple of days ago, but thought you would all get a kick out of it as well. An image found via popurls.com:

“How Genetics Works”

How Genetics Works

Photo by Rene Maltete, 1930

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Misrepresentation of Genetics on TV: Harmless or Harmful?

Most medical TV dramas have, at some point, featured a genetics-related plot line. In a “Grey’s Anatomy” episode,  three siblings struggle with the decision to have prophylactic gastrectomy  after testing positive for a known familial gastric cancer mutation. In that same episode, a high school student in a marching band is “cured” of her seizure disorder after be correctly diagnosed with ARVC. And during an episode of “House,” one of the residents draws her own blood, runs it through a machine and quickly receives a print out confirming that she carries a familial Huntington’s disease mutation. Notably, she tested herself only after extensive bullying from her physician boss.

Until recently,  I wrote these scenarios off as interesting, humorous and somewhat frustrating misrepresentations of genetics in medicine. However, a recent lecture I heard by the Ontario Deputy Chief Coroner got me thinking otherwise. As she explained, misrepresentations of the work of a Coroner by TV programs are a huge detriment to the work of their office and in turn the relationship between the Coroner and families. Families are often distraught when the Coroner is unable to provide a specific time of death (e.g. 2:23pm), a quick explanation of cause of death and timely autopsy report. This got me thinking about the role of TV in my everyday interaction with patients. Do these misrepresentations signifantly impact my counselor-patient relationship?

The most obvious misperception that I encounter on a daily basis is the amount of time it takes to receive genetic test results. People are shocked when they learn their results may take anywhere between one and three months to receive. And I often spend a significant amount of time downplaying the “absoluteness” of genetic information: a negative genetic test result doesn’t rule out a diagnosis and a positive predictive test result doesn’t guarantee the onset of a future medical issue. Not surprisingly,  survey’s have shown that diseases featured on “Grey’s Anatomy” have increased the public’s knowledge of a condition.

So, in an ideal world, representing medical genetics accurately in TV programming could possibly enhance the genetic counseling appointment. We all know that there are enough interesting and ethically charged stories in genetics to work with. Any TV producers out there care to take this one on?

Then again, I supposed waiting three months for test results wouldn’t make for the most exhilarating television.

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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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Guest Post: Female Buyer Beware

By Lola Cook

Lola Cook, a board-certified genetic counselor, currently works as a prenatal genetic counselor at a private hospital in Indianapolis. Previously, she worked in pediatric and adult genetics for 11 years at Indiana University Medical Center. She is the Project Director of a Maternal-Fetal Medicine and Genetics Maternal Child Health grant funded by the Indiana State Department of Health.

This past week, I was skimming my Journal of Genetic Counseling when my attention was drawn to the article by Tamara Somers and her co-authors about women’s interest in cancer genetic services, even when they do not have a significant family history. Part of the interest seemed related to their cancer distress. I am not surprised, for it mirrors my own level of interest or, should I say truthfully, anxiety about breast cancer. Added to my background worry, is the fact that my colleague who is the same age as I, in her 40’s, was recently diagnosed with stage III breast cancer following a normal screening Myriad BRAC Admammogram a year before and a limited family history. And then there are the new Myriad direct-consumer ads about BRCA gene testing finding their way into our own homes!

The National Cancer Institute estimates that currently the lifetime risk for a woman to develop breast cancer is 12.7%, which translates into 1 out of 8 women.  They go on to state:

These probabilities are averages for the whole population. An individual woman’s breast cancer risk may be higher or lower, depending on a number of factors, including her family history, reproductive history, race/ethnicity, and other factors that are not yet fully understood.”

To be honest, it blows my mind that not more is done to offer and provide breast cancer risk assessment to women when you consider the background risk and so many mitigating factors. In addition, some of us are worriers, and not necessarily objective ones.

I was lucky (or just a worrier with resources). I knew to call the cancer genetic counselor where I work, when my cancer distress was increasing.  She suggested a general breast cancer risk assessment clinic in our hospital, not the cancer genetics clinic, since I did not “qualify” with my mere late-onset breast cancer mother. It took a few contortions to get into this clinic for breast cancer risk assessment, and then it was found I qualified for yearly MRI breast examinations based on my personal and family histories. I was high risk. In fact, the radiologist reluctantly admitted after my mammogram this year “that with your dense tissue, the detection rate of the mammogram is probably a little better than 60%. It’s good you are having an MRI”. How many years had I obediently done my annual mammogram with no specifics provided or context given to the results, just assuming I was in the clear zone? Those of us interested and yes, even anxious, can not assume basic and individualized breast cancer risk assessments and/or referrals will happen during our 15-minute primary doctors’ visits or even by our local breast centers!

As a genetic counselor and as a female, I suggest that we get the word out to our friends, families, and patients with limited family history about the option of breast cancer risk assessment in a formal setting, whether it is like the clinic I attended or a specialty genetics clinic. As health care providers, the more difficult task is to figure out how to make breast cancer risk assessment services more readily accessible to all women. At a time when we are faced with direct consumer ads in our own living rooms, women can not be fooled that screening and testing are enough. Cancer risk assessment services can do much to adjust risk perceptions, reduce anxiety, plan truly useful and individualized screening and testing protocols, and coordinate care. Based on this small study, we know the likely response, if we just take the time to ask and refer.

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DC Takes on DTC: The “T” Doesn’t Stand For Tomorrow Anymore

On the first day of a two-day workshop on direct-to-consumer genetic testing co-sponsored by the Institute of Medicine and the National Academy of Science, Muin Khoury of the CDC raised the following question: if we speak out against the current crop of micro-array based genome-wide screens. are we allowing the perfect to be the enemy of the good?  An answer, suggested the generally skeptical panel, might be based on how strictly you defined the word “good.”  Several speakers, including Dr. Khoury, were unimpressed by the predictive capacity of today’s SNP-based disease-gene associations.  Despite some notable successes where specific alleles have been demonstrated to increase relative risk in a meaningful way (age-related macular degeneration was usually the example), the massive number of genes identified through GWAS since 2006 have been, as Alan Guttmacher of NHGRI stated in his talk, “great for understanding the biology of the disease, but weak predictors accounting for only a small fraction of heritability.”

Complaints fell largely into three categories: validity, utility and the public health risks of giving out this information, right or wrong.  As regards validity, a number of speakers pointed out that these early data were largely unreplicated and that standards did not exist to define what constituted a meaningful level of “association.”  Utility was usually invoked to question whether or not the test would add information that was clinically significant – would it affect medical decision-making, or provide a better indicator than simpler tests or the underutilized gold standard of family history (oh that again!).  These are excellent questions, since most GWAS-based associations don’t move the dial much on risk – increases tend to be in the range of relative risks under two, which, in technical terms, means you are a smidge more – or less – likely to get the disease or condition.  But cost is also a question of utility, since changes that are not affordable cannot be incorporated into medical practice.  The cost of scanning continues to fall and a dizzying pace – and multiple panelists insisted that we will see complete genome sequencing for under $1000 by the end of 2010 – but what about the costs of follow-up?  What pot of money will the insolvent U.S. medical system find to pay for added MRI’s, or blood tests, or doctor’s visits for patients whose SNP profiles suggest an increased risk or this or that?  Reading the websites for, Navigenics, 23andme, and deCODE, you might come to believe that your doctor will thank you for bringing this useful information to his or her attention, but Dr. Patricia Ganz of UCLA Medical School, brandishing the twenty-five page report from 23andme sent to her by a patient, wondered aloud if the average physician would in fact appreciate that lovely extra time together, reading pie charts.

And what does all of this mean for genetics counselors?  Joe McInerney, executive director of NCHPEG, spelled out the good and the bad of it in his talk on understanding among health professionals.  Genetics, he predicted, will be the first field in medicine to be de-centralized: moved from the realm of specialists back into the world of primary care.  Will we move from being educators of patients to being educators of health professionals?  McInerney suggested that pressure from patients interested in understanding what to do with their $1000 genomes will push physicians to seek expertise in genetics.  Other participants pointed out that the generalized field of genetic counseling may be asked to provide more in the way of genetic counselor specialists to meet demand as the walls between Mendelian disease and common complex disease come crumbling down in an avalanche of new information.  Forget the term “genetic disease,” McInerney declared!  They are all genetic diseases now – and in a world that he described as “woefully unprepared” for the era of genomic medicine now approaching with all the subtlety and control of a locomotive off the tracks, the question lingers: where will we find ourselves in this new landscape?  In the absence of a perfect answer, are we prepared to define when “good” is “good enough”?

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Label Jars….Not People

jarsAs genetic counselors we hope to make a difference in someone’s life.  Why not expand on that?  While our primary focus should be on our patients, we should also strive to utilize our skills outside of the workplace.  Not only will this have an impact on the world, it will also indirectly have an impact on our patients.  It’s a circle.

It does not have to be something that requires a lot of time, thinking power, or effort.  It can be something very simple.  There are many different ways that this can be done; this is just one example.

Labels.

You have been labeled at some point no matter who you are or where you are at in your life right now.  You have felt how degrading those labels can be.  You know first handed how it can negatively affect your perspective and other people’s perspective of yourself.  Some labels originate within the medical community.

We may use labels to communicate effectively and quickly with busy MDs.  We may have to use them in order to protect a person’s confidentiality.  However, labels should only be used when absolutely necessary.  They should not be used to form expectations of someone.  Genetic counselors oftentimes strive to use sensitive language with patients.

For instance, we may say “change” instead of “mutation.”

We try to choose neutral words when possible.  We have seen how word choices affect our rapport with patients.  I’m sure you’ve heard of the idea of making it a point that people are people first and a genetic condition is just part of who they are.  An example would be to say “people with Down syndrome” instead of “Down syndrome people.”  We should take the same sensitive approach in daily conversations outside the workplace.

This helps to prevent pigeonholing people and shows respect.

We can take what we learn from the workplace and apply it to the outside world to make a difference.  Exploring various ways to apply our genetic counseling skills outside of the workplace will only make us better genetic counselors within the workplace.  Once again, it’s a circle.

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