Today I am back on the soap box.
But I will also give a little worthwhile and scary data as well.
Yesterday I was at a cocktail party for the physicians in my upscale new england/new york town. I was speaking with an "educated" gastroenterologist. In fact this physician has been in practice for 29 years, went to medical school at Cornell, and is now part of a large practice in suburban NY. He told me that some "lab reps" from Myriad were now going to offices of Gastroenterology, Hematology/Oncology, and Primary Care physicians extolling the benefits of genetic testing for cancer predisposition. This physician said that because of this they are now testing younger patients for Hereditary Non-polyposis Colon Cancer/Lynch Syndrome
He went on to talk about a 37 year old woman who had early polyps, was tested, and was positive for a mutation in a DNA repair gene called MLH1. I told him that was great. Then I asked him who he uses for genetic counseling. His eyes glazed over, seeming not to understand the question. Slowly as if to save himself he said "What does she need that for? She's not having any kids." OMG, I almost lost it. Slowly I said "If you fail to counsel a positive test result, you will get sued." Then his eyes lit up "I better go tell her to get counseling" he said.
- Beware non-genetic doctors bearing genetic tests. 1 in 3 misinterpret tests for colon cancer.
- GI doctors maybe more likely to elicit cancer history in the family, but are less likely to notify AT RISK family or even let the patient know family is at risk
- In my education study that I will be presenting at the Association of Program Directors in Internal Medicine in San Diego I found some scary things as well.
- Residents in academic and community programs consistently fail genetics knowledge exams
- The confidence of an Internal Medicine resident physician in performing family histories is inversely proportional to their performance on knowledge exams!
- Physicians in practice now are even worse than the training physicians today
- But the scary thing is, the ones who have the confidence to DO genetics, actually have no knowledge in how to do it correctly.....That's why we need gene sherpas.
7 comments:
Wow, that is a scary read. What were some of the scary things you noticed while you were in California?
Don't you mean sherpas need jeans?
At the meeting I found out that the Teachers don't know how to teach genetics. Some don't even want to teach genomics. Even Sherpas have Genes.......Levi's to be precise
I used to work for Myriad Genetic Laboratories in 2002, and even at that time [under the direction of the company (and common sense)] I saw GI docs, OBGYNs, and even a few PCPs (though mostly surgeons, oncologists, and department chiefs). Please know I do appreciate your alarmist concerns regarding uneducated physicians and the genetic testing and counseling process, as I recently attended a grand rounds talk by an internal medicine residency director from a major metropolitan area who is working on a comprehensive genetics education program for his/her residents and speaking about this nationwide. I was impressed w/this director's lack of knowledge regarding the cancer genetics testing process, and it scares me that he/she is in charge of teaching other docs about this. However, your genetics elitism ultimately prevents the vast majority of appropriate candidates from being tested. Oregon, I learned today, has a law (statute) that apparently prevents any MDs except those w/specific training in genetics to send in tests for brca1/2, mlh1, msh2/6 etc. This is ridiculous. Ask me to elaborate, I would be more than happy to do so. Should only cardiologists prescribe metoprolol? By creating further loops for a pt through which to jump before getting tested, you ultimately create more disconnects in an already disjointed process. If your oncologist/surgeon/pcp says, "You need to go see a medical geneticist," how many pts actually go? My uneducated guess would be a very very small percentage, for ANY NUMBER OF REASONS!!! How many of those same patients get tested when that surgeon/oncologist/pcp takes ownership of the testing/counseling process? In my brief experience at Myriad, I saw innumerable instances of competent non-medical geneticists guide their patients through the entire process. Sure your thoughts are correct in an ideal world, but we are talking about clinical settings. OMG, get off your high horse . Respectfully, Scott Everson, RN
wisconsin1976@yahoo.com
503.267.9732
Scott,
Welcome to the Gene Sherpa, where my aim is to educate the public about the benefits and risks of genetic testing. In addition I hope to educate some physicians as well. Your point is well taken. Physicians should be able to order genetic tests for their patients who meet criteria for appropriate testing. I hope with your time at Myriad you were able to educate a physician or two about bethesda and amsterdam criteria, or perhaps explained BRCAPRO or another set of ACMG guidelines. Let me tell you that if you have not seen the stop the tide ad, you are deluding yourself. This is an ad campaign, plain and simple intended to expand the market. Not to educate. Shame on you for not pointing this out. It has been my experience interacting with reps like yourself that there is little education at all. Only fear mongering that MDs are missing genetic cases, and warnings of litigation. Let me tell you, if uneducated physicians give wrong test results as they do 1 in 3 times with APC testing, there will be even more litigation. Who will be there to counsel the family afflicted? Myriad? I don't think so. Could the GI doc that I saw in Greenwich counsel? Especially when he said "She's not having any children, why does she need counseling?" Let's face it, genomics is complicated, there are no simple solutions and if you think testing everyone is the solution, then you are naive. Testing is only best when utilized in context of family history, proper risk assessment, and counseling. Some physicians can do this, MOST cannot. I don't agree with the law in Oregon. But I am NOT a genetic elitist. I am trying to HELP PATEINTS not get screwed up by improper testing and incorrect counseling. But that didn't pay your salary when you were with Myriad...did it? Did you think to ask a doctors knowledge prior to telling her she should be doing testing? If so I applaud you, because most reps don't. And as for the stab at comparing metoprolol to testing.....I don't want the psychiatrist giving it out. But the internist who DOSED IT OUT EVERY DAY DURING RESIDENCY should be able to. Feel free to call me and we can discuss this anytime.
-Steve
BTW I AM A CLINICIAN, I SEE AND PROTECT PATIENTS EVERY DAY. JUST AS I VOWED WHEN I RECEIVED MY MD.
What percent of patients w/HNPCC don't meet amsterdam/bethesda? Again w/your academic idealism. I have no idea what the "Stop the Tide" campaign is, a Myriad campaign? No matter, your lack of appreciation of market forces (reality) in health care is telling Nevertheless, I am generally disgruntled. I am also an ex-employee of Myriad Genetic Laboratories (Arlene Reisman may you rot in a hell that doesn't exist). I am not however a disgruntled ex-employee, just an oncology nurse, who sees for every one of your 45 yr-old Whipple cases, 10 women dying of breast and ovarian cancer because "genetics elitists" are trying to protect their careers. Yeah yeah, protect the patients, I know, it's all about the patients.
What, still no response? It has been two years, how many lawsuits have there been? How many millions of people who should be tested have yet to be tested? You still at Yale? -- Scott
Post a Comment