Why “H.R.3235 The Access To Genetic Counselors Services Act” Makes ACMG Feel Threatened By Genetic Counselors (Again)

In the  United States, genetic counseling services are typically delivered by masters level genetic counselors. Yet Medicare, the largest health insurer in the US, does not recognize genetic counselors as reimbursable providers. No health professional is better qualified to provide genetic counseling than a genetic counselor. Absurdly, then, Medicare’s policy assures that the service is covered ONLY if it is provided by mostly unqualified health professionals. It boggles the mind.

But this could change if Congress passes H.R.3235 – the Access to Genetic Counselor Services Act, along with whatever version winds up in the Senate. This bipartisan bill would allow appropriately certified genetic counselors to be covered by Medicare and to order genetic tests as local licensure permits. The bill has broad support in the medical community. Even the AMA has stated they will not oppose the bill.

So why in God’s name has the American College of Medical Genetics and Genomics (ACMG), the primary professional organization of MD clinical geneticists, made the bone-headed decision to come out against this bill, even when many genetic counselors are members of ACMG? ACMG claims that they would support the bill only if genetic counselors are not allowed to order genetic tests. This is an untenable position, especially in light of the abundance of data demonstrating that genetic counselors not only are savvy about ordering tests but having them involved in the process results in significant cost-savings and increases the accuracy of test interpretation. I might add that there are virtually no equivalent data demonstrating that clinical geneticists bring equal value and expertise to the ordering and interpretation of genetic tests. They probably do but, hey, show me the numbers. Furthermore, the anti-genetic counselor position is contrary to ACMG’s Vision and Mission to “to facilitate the delivery of quality clinical and laboratory medical services to patients and their families…” It’s hard to facilitate testing if  the country’s largest group of genetics providers are excluded from ordering genetic tests (there are roughly 2-3 times as many certified genetic counselors as there are certified clinical geneticists).

I suspect that ACMG’s position stems from both historical and economic factors. The relationship between masters level genetic counselors and clinical geneticists has a complicated 50 year history. When the first genetic counseling graduates entered the job market in the 1970s they were likely to be employed in a Medical Genetics department where they were supervised by a clinical geneticist. Not uncommonly, genetic counselors were viewed by clinical geneticists as lower echelon providers who more or less served as “doctors’ helpers.” Indeed, back then many clinical geneticists argued that genetic counselors shouldn’t even be allowed to call themselves genetic counselors because in their view only physicians should serve in that role. They wanted to wall off genetic counselors from meaningful clinical practice and call them Genetic Associates.  There was also more than a hint of underlying sexism. Most clinical geneticists at the time were older males and 95% of genetic counselors were bright young females – those “girls” just weren’t good enough to do “real” medical genetics. The two professions, though, were in a symbiotic relationship; it would have been nearly impossible to run a large genetics clinic without the labor of genetic counselors or clinical geneticists. One profession could not live and thrive without the other.

With the wider availability of prenatal testing in the 1980s, many genetic counselors found employment in prenatal diagnosis clinics, which were usually run by obstetricians rather than clinical geneticists. Genetic counselors gained a greater sense of independence and professional confidence serving as the genetics experts in these new settings. This expansion of genetic counseling employment beyond traditional genetics clinics was further stimulated by advances in genetic testing for more common conditions like cancer and cardiac disorders in the 1990s. Genetic counselors were not gonna’ work on Maggie’s Farm no more whereas clinical geneticists pretty much kept themselves down on the farm.

As I have described previously, this came to a head in the early 1990s when the then American Board of Medical Genetics petitioned the American Board of Medical Specialties to create an American College of Medical Genetics. This move would serve to increase the prestige and potentially improve reimbursement of clinical geneticists’ services. The American Board of Medical Specialties agreed to do so – but only if masters level genetic counselors were not part of the deal. This resulted in very bitter debates between genetic counselors and clinical geneticists. I have vivid memories of some disagreeable and uncomfortable, uh, discussions at national and local meetings. One clinical geneticist told me at the time that the separation would mark the end of the genetic counseling profession (boy, was he wrong). Ultimately, with the thoughtful but firm guiding hand of the leaders of the National Society of Genetic Counselors, genetic counselors agreed to secede from ABMG. It turned out to be the best thing that ever happened to the genetic counseling profession. Genetic counselors and clinical geneticists thereafter still maintained a professional relationship; after all, many of them worked together. But professionally speaking, genetic counselors pretty much left clinical geneticists in the dust and clinical geneticists are still struggling to catch up. Most genetic counseling and ordering of genetic testing gets accomplished without any input from a clinical geneticist and it gets done quite well, thank you very much.

Incidentally, I would like to remind everyone that  in the 1980s, when the American Board of Medical Genetics administered certification exams to both genetic counselors and clinical geneticists, all candidates need to pass two exams – a general exam that everyone took demonstrating overall knowledge of medical genetics and then a separate subspecialty exam each for genetic counselors and clinical geneticists. In most years that the exam was administered, genetic counselors had higher average scores and pass rates on the general exam than clinical geneticists did. So don’t talk to be me about questioning the competence of genetic counselors.

Economically, clinical geneticists are struggling to survive. Salaries are low and recruitment for fellowships is a struggle. Clinics are understaffed and wait times for an appointment in a genetics clinic can be as long as a year. Worse than running in place, they are losing ground. Thus, AMCG’s position on H.R.3235 gives the appearance of a desperate attempt to protect its shrinking economic and professional turf.

This is not 1980 and there aren’t any Genetic Associates anymore. Genetic counselors are damned good at providing genetic counseling and ordering and interpreting genetic testing. Genetic counselors know their limits; they aren’t looking to perform medical procedures, admit patients to hospitals, prescribe medications and other treatments, or undertake a comprehensive dysmorphology exam. In fact, in many states, local licensure laws already allow genetic counselors to order genetic tests if the patient has a private insurer or Medicaid (but not if the patient is covered by Medicare). I am not aware of any data suggesting that this has negatively affected the practice of clinical geneticists. It’s just made it easier for patients to access genetic testing, simplified navigation of the tortuous pathways patients must go through to obtain insurance coverage for testing, and helped assure that test results will be properly interpreted and integrated into the patient’s health care strategy.

But neither ACMG nor genetic counselors own genetic testing. Most clinicians, regardless of specialty, can order a genetic test. Heck, consumers can order tests themselves online, if they are so inclined. ACMG needs to better serve its membership and patients by adapting to a changing world and developing a different clinical and economic service delivery model. Opposition to H.R.3235 does not help patients, genetic counselors, or, if they cling to a dated view of medical practice, clinical geneticists themselves. ACMG must support H.R.3235 and recognize that genetic counselors play a critical role in the delivery of medical genetics services and testing.

 


You can contact your local congressional representative to express personal or organizational support fo H.R.3235.


Thanks again to Emily Singh for help with graphics.

27 Comments

Filed under Robert Resta

27 responses to “Why “H.R.3235 The Access To Genetic Counselors Services Act” Makes ACMG Feel Threatened By Genetic Counselors (Again)

  1. Nancy Zellers

    What a great piece Bob Resta – I think you hit the nail on the head!

  2. Great perspective, Bob!!! I couldn’t agree with you more, and it is fascinating to get your historical perspective. PSA: WE KNOW MANY MEDICAL GENETICISTS DO SUPPORT HR3235. If that’s you — please contact the NSGC leadership to make your voice heard.

  3. Michele Disco

    Amen.

  4. Heather Shappell

    Thanks Rob.

  5. Debra Collins

    Was the ACMG decision made via a membership vote, or only a BoD vote?
    Are floor votes possible during the March membership meeting ? That could make that meeting interesting – anyone at the meeting should consider coming to that meeting, any making comments at the mike.

  6. Daniel Riconda

    You’ve provided a nice historical context that may not be familiar to some of our younger colleagues. Well said!

  7. Katie Stoll

    They didn’t include genetic counselor ACMG members in the vote. I think there will be some disagreeable and uncomfortable discussions at the upcoming meeting this year and hopefully some will be at the mic. Thanks for the great article Bob.

  8. Barb Biesecker

    Bob, you are so articulate in conveying your strongly held views and in resting them on facts and history. It’s so much more effective than ranting discontent (an approach I have been known to take). I do hope that GCs attending ACMG stand up to the mike with conviction that the facts and history you have reviewed bode poorly for medical geneticists to gain from not supporting HR 3235. Thank you!
    PS No medical geneticist in my circles supports this bill!!

  9. Lisa Amacker North

    Great summary to remind us of the deep seated history that gets in the way of patient care.

  10. Libby Malphrus

    Beautifully stated! I would add would be that genetic counselors were still taking the same general genetics exam as medical geneticists when I took the boards in 2002 so this practice lasted for several decades. It is also insanely offensive for ACMG to state we shouldn’t “practice medicine” when many other advance practice providers (nurse practitioners, physician assistants, etc) do so with many more freedoms than GCs with Master’s level training. I couldn’t agree more that we need to continue to be vocal about this issue! Thanks for your efforts!

  11. Andrea Moon

    Thank you for this well thought out, wonderful post. I especially appreciated the historical context.

  12. Janice Berliner

    I always look forward to your posts, Bob, as they are always interesting and entertaining. But this one is truly important and I appreciate your detailed history and analysis. I hope that discussions at the ACMG meetings will be constructive, respectful and productive.

  13. Beth Ann Burt

    yeppers! I was planning on the San Antonio meeting this month, but have pulled out. Just cannot give them any of my money at this time. (yes, I am an “experienced” gc, lived through most the NSGC history- and still believe in boycotts).

  14. Shellie Kieke

    Thank you for this amazing post, Bob Resta! As others have said, I always look forward to your posts but this one was especially important. I am newer to the field (in a second career), so I did not live the history that you describe but I had some understanding of the past “baggage.” Thanks for such a thoughtful and well-worded perspective supported by data. I’ve read a lot about this issue, but as I read your post it made everything so clear to me and I found myself nodding the entire time. I appreciate all that you do for our profession!

  15. Valerie LaCroix

    Well put!! It is always important to put things in context!!

  16. Kristina Habermann

    Thank you for this well written piece. There are a number of medical geneticists who DO NOT agree with the ACMG and have written a letter of support of HR 3235. Please share this link with geneticists who will support HR 3235 and ask them to sign:
    https://www.surveymonkey.com/r/Geneticist_Support_of_HR_3235

  17. Emily Lisi

    Thanks so much for your voice here! I’m in total agreement with everything that has been said above! And yes, as a GC, I took the boards alongside several current “world-renowned” clinical geneticists when they were fellows. My GC colleagues and I kicked their butts!!:):)

  18. Debra Collins

    I am still wondering how we got here – how was the ACMG membership polled? When exactly was the membership vote (I assume to all full members only), was it part of a larger questionnaire? Did they realize what the vote was (pros / cons)? What was the wording of the question, what was the response rate, tally / breakdown of the votes?
    – We can encourage institutions to join this list: https://www.nsgc.org/p/cm/ld/fid=678
    – We can ask individuals to respond to this NSCG created survey and list themselves as supporters https://www.surveymonkey.com/r/Geneticist_Support_of_HR_3235

  19. Debra Collins

    I wonder what the supporters / ACMG membership ratio is – it would be great to get 51% plus to add their before the ACMG meeting (in the next 10 days)!
    https://www.surveymonkey.com/r/Geneticist_Support_of_HR_3235

  20. Christopher

    This is such an articulate summary of the ‘elitist’ mentality of the medical geneticists. Unfortunately for me, I am still a trainee in the UK, but on a scholarship offered by a country which feels threatened by GCs. They see me as a family history taker at the most. It is so frustrating, I sometimes question whether this is worth the hard work, knowing I will have to fight and work in such an environment.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s