Wednesday, October 8, 2008

CGCs, NPs and Me!!! Genetics will never be the same!

After about 50 emails, it became crystal clear. CGCs think I am bashing them when I point out their limited clinical training.

They also think I am bashing them when I point out that they should not be giving advice on medications that they do not know all the side effects or risks.

They also think I am bashing them by promoting the role of nurses in clinical genomics.

Wow! I never thought this would raise such chaos! I first would like to point out what Genetic Counselors are trained in. From the ABGC competencies.

An entry-level genetic counselor must demonstrate the practice-based competencies listed below to manage a genetic counseling case before, during, and after the clinic visit or session. Therefore, the didactic and clinical training components of a curriculum must support the development of competencies that are categorized into the following domains: Communication Skills; Critical-Thinking Skills; Interpersonal, Counseling, and Psychosocial Assessment Skills; and Professional Ethics and Values.

I highlight Communication skills because of what the ABGC demands.

From the site:

Can convey genetic, medical, and technical information including, but not limited to, diagnosis, etiology, natural history, prognosis, and treatment/management of genetic conditions and/or birth defects to clients with a variety of educational, socioeconomic, and ethnocultural backgrounds.The student is able to demonstrate knowledge of clinical genetics and relevant medical topics by effectively communicating this information in a given session.

What happens when that genetic condition is stroke? What about Left Main Coronary Disease? How about Inflammatory Bowel Disease? Coumadin metabolism???? There are a small cohort of counselors who know about these topics through workshops, or perhaps working with a doctor who studies these diseases....but that is a small few......like Karen Greendale. Who BTW is doing a wonderful job of getting this group together.

I hope you see what I am getting at.....most never trained for these things, but will soon be expected to handle this........BTW, this IS genomic medicine.

I just don't see how we rationally can expect someone who hasn't worked with coumadin or taking care of patients in a telemetry unit, to explain the workings of the heart or the cytochrome p450 system without some sort of medical clinician involved. It is just not fair or realistic.

This is not bashing your profession. It is pointing out the shortcomings of inappropriate utilization of manpower. Trust me. You will have more than enough work. But when it comes to these fields, I think a little more clinical training would help CGCs carry out Genomic Medicine counseling. Is that too much to ask?

I don't think so.

I want to remind all Genetic Counselors, you are part of the solution, not the problem. Yet, the comments and emails I received were reminiscent of the 100s of emails and comments from the Silly-Con Valley types when I said that they should have some sort of genetic counseling pre and post SNP scan and when the Government agreed with ME.......You are part of the solution CGCs, I never said you weren't. I just see your role evolving, and that evolution requires change.

Despite what Drew Y at ThinkGene says, you will not be programmed away. I have never seen Python code hand someone a tissue when they are crying, or comfort them with a caring voice.

Now some comments from my wonderful readers...

Anonymous

Yes, a CGC should have a year (or two) of clinical training. When I was shadowing a GC a couple of years ago, the doctor asked the GC if she had any thoughts for what genetic condition the patient may have. The GC said: "I don't have any idea." Some GC's will continue to learn at a much deeper level than other GC's.You couldn't have said it any better: "They don't even speak the clinical language very well. In order to take accurate medical and family histories, they need to know the genetic implications of sudden death, stroke, heart attack, coumadin metabolism, protonix efficacy, alzheimer disease, COPD, I could go on and on. But if they never saw it and talked about it, how could we ever ask them to learn this stuff through Osmosis or "Clinical Workshop"?????"
The way a CGC is trained needs to be adjusted



I agree completely



Anonymous

I am a CGC and I appreciate your honest and well-articulated comments on our limited clinical training. CGCs have some important skills that most physicians do not. Our professional organization (http://www.nsgc.org/) defines our scope of practice very nicely, recognizing these limitations. However, CGCs are not licensed providers in most states, nor are we recognized as allied providers by CMS.


This means that our scope of practice is not regulated or even on the radar of a regulatory body. So, what happens in practice is that the role of the CGC in a given case is determined by the physician s/he works with (usually medical geneticists). The physician is in the position of being the CGC's boss, the lines are muddied, and the role of the CGC is at the whim of the MD.


This is a terrible position for the only workforce that right now DOES have the genetics knowledge to provide to patients in the age of genomic medicine.

Our scope of practice needs to be better embraced by the health care system, with our role being one of providing risk assessment, genetic testing options and educators of patients and providers. Most CGCs feel very uncomfortable discussing management, but are put in that position by geneticists who frankly rarely manage

Thanks for the comment
I agree, clinical geneticists need to stop getting on conference calls for grants or in the lab, and get their asses into the clinics and on the floors. They have failed all CGCs out there. You could have used their clinical education!


Anonymous

Gosh, I find it awful ironic that you BASH genetic counselors so harshly on your blog, yet have them listed on your “Helix Health of Connecticut” website in the very first sentence about the healthcare team. Do you really think that your silly attempt at an apology to your “excellent CGC colleagues” will be sufficient? And gee, while we’re talking about “clinical ineptness”, I thought I should also throw out the fact that you specifically list services such as “preconception genetic evaluation” but I see no one on your team with an obstetrics background. (Haven't updated the site yet)

I guess having someone with that type of “clinical training” wouldn’t be necessary since you’re just helping a couple plan for a PREGNANCY.

Luckily, it seems as though the only patients that are going to be able to seek your great “expertise” are the few economically elite. For the rest of the population, we’re going to have to settle for consultations with all those well-educated, compassionate, hard-working genetic counselors out there.

Anonymous


No one said you weren't educated or hard working. I just think you shouldn't be forced to practice medicine because no physician will work with you......simply due to the fact they have grant deadlines.....As for our fee for service practices. We do this to keep our doors open, rather than have physicians who refuse to see patients and instead put the CGCs out on an island to either bill for 60 dollars per visit or commit insurance fraud.

I repeat. Genetic counselors are a valued part of the "team". I pejoratively put out there that there wouldn't be room for you.......If you continue educating counselors the way that you have always done it this could push you away from pharmacogenomics or chronic adult disease and personlaized medicine. Listen, the same is true for pediatric geneticists. The same is also true for non-genetically educated internists......

We have to get a grip on what we can and cannot do without some sort of formal education.....because if we don't, then we will have CGCs giving bad advice about medications or adult diseases.........or Internists misinterpreting genetic tests. Can't you see that it is just as bad????

The Sherpa Says: There will always be a great role for counselors. But unless they start learning the fields most affected by personalized medicine, they will find themselves forced to do things they aren't prepared to. We have to fix the broken genetics system AND the broken medical system. Because if we don't, a whole heap of people like Drew Y will point to our flaws and try to write code to "fix" us!!

3 comments:

Anonymous said...

I took this from an article that I'm writing for why having computers do all of the work won't work: "After a family member has a positive test result, a negative test result in the rest of one's family may bring relief because it indicates that they are not at an increased risk of developing the same condition. However, if one's family history is indicative of a genetic health condition, a negative test result is not informative because the test does not help determine which family member may or may not be at increased risk of developing the same condition.

Psychological discomfort can arise among individuals who are at an increased risk for developing the disease or for passing on the gene mutation genes to an offspring.

Studies have indicated that carriers of BRCA1 have a higher distress level than noncarriers after they are found to have a mutation in the BRCA1 gene."

The article that I took this from is not yet published...this section of the article is apart of a series of articles I'm working on (10 articles in all).

Andrew said...

Yes, I will. But, I said that councilors will always have a role. After all, friendly tech support voice will always be needed, and I don't want to be that, nor would I be any good at it, and neither would most doctors.

Andrew said...

anonymous: um, you mean that a negative BRCA test does not substantially reduce the risk for breast cancer? Yes, that's a relevant result that should be reported with penetrance. Usually, it's not, and that's why I enforce reporting prevalence in my HelixGene reports.

If you are a genetic councilor, anonymous, I change you to write a very simple logical equation that refutes the common assumption that a negative result of a high penetrance test means substantial reduced risk.

And of course computers won't do all the work. But something has to crunch the numbers and generate reports, and if you can't write out the formula and do the math, then that's not going to be you. Studies show that 85% of doctors usually can't. So, maybe you'll be the one who reads a compilation of reports in a sympathetic tone.