Tag Archives: future of genetic counseling

by | December 10, 2019 · 10:58 PM

Genetic Counselor Reinvented

I have a confession to make. Now that I am half way through my 60s – not exactly elderly, but too old to die young – I have become increasingly insecure about my relevance to the field of genetic counseling. My ethos, counseling style, and knowledge base are still anchored in the previous century. My anxieties are heightened by practicing in a field dominated by young, very bright, highly trained people. I fret that I am viewed by my colleagues with bemused, grandfatherly respect and not as a key player who is relevant to the practice of genetic counseling or to the many exciting pathways that the profession is pursuing. Call it fear of being thought of as a vetus crepitu (Old Fart sounds so much better in Latin).

Then too there are the demands of employers to see ever more patients, the promise/threat of artificial intelligence to replace/supplement genetic counselors, and increasing demands to access genetic counseling through means other than a brick-and-mortar face-to-face interaction. It’s enough to make me want to call it quits and enter a peaceful retirement where my stressful decisions will be “Should I sleep another hour?” or ” Which show should I binge-watch – all 5 seasons of ‘The Wire’ or ‘Breaking Bad’?” Omar, Stringer Bell, Mr. White, Leonel and Marco Salamanco (“The Cousins”), Gustavo – I hardly knew ye and heartily miss ye.

I was mulling over these thoughts and insecurities the other day when I had an Aha! Eureka! Fall-Off-My-Ass moment that will revitalize my moribund career and make me the envy of genetic counselors of all ages. I have 36+ years of experience with more than 20,ooo patients and a shopping bag full of clever counseling phrases (“Families can be complicated sometimes.” Pause, look directly at the client, and give a slight , knowing, supportive nod of the head. or “There’s no need to rush into making a decision about genetic testing in your situation. Testing  is important  – pause an extra beat to focus attention on the next words – but not urgent.”). I have parlayed this experience into an e-asset by reinventing myself as a biotechnochimaera of a genetic counselor and a chatbot. Ecce – ChatBob!

Deciding to become ChatBob wasn’t exactly brain surgery. Well, actually, it was brain surgery. My cousin, a brain surgeon, and my niece, a computer whiz, worked together to implant a variety of neuronanochips, teeny-tiny receivers, micro-routers, and other itty-bitty doodads into my cerebral cortex and other important sections of my brain. Anyone with an internet connection can now access my brain for the purposes of genetic counseling. The microrouters and neuronanochips allow multiple people to simultaneously  access my CNS. I don’t know how that stuff works; my niece explained it to me but I didn’t really understand a word she said. But I don’t have to understand how it works because it does it’s job automatically.

Okay, the external portion of the hardware is a bit, uh, geeky but, hey, it’s the beta-version. Undoubtedly some product designer from Apple will eventually turn it into a fashion statement that will make even the hippest hipsters suffer a serious case of cool-envy.

Because I have been a genetic counselor for so many years I have heard every possible question and because I can do it in my sleep, patients in any time zone have access to ChatBob 24/7. The neuro-computer connections hook up to a deeply embedded part of my unconscious mind so I am usually unaware that a counseling session is even taking place (admittedly, that sometimes used to happen when I saw patients in person too). I can binge watch whatever television series I am in the mood for while the Counseling and Education Center of my brain – the striatum bovis stercis – subliminally and simultaneously counsels dozens of patients. Labs download test results directly into my brain which then sends a message to patients’ computers so they can immediately access their reports and my clinical interpretation.

I am in great demand by laboratories and hospitals wanting to free themselves of the burden of the salaries of multiple genetic counselors. I can be easily integrated into Epic or any other electronic health records platform. Researchers looking to allow people from all demographics to have easy access to genetic counseling in research projects are pounding on my e-door. ChatBob is a researcher’s dream because all the counseling is done by one counselor so they don’t have to control for counselor variability in skill, experience, or style. ChatBob is scalable to a population level;  hey All of Us , why not take All of Me? Telegenetic counseling startups are pleading with me to replace their entire staff.  I’ve had inquiries from Google wondering if they can implant advertisements in my brain for products related to patients’ genetic test results.

There have been some mishaps and a few crossed wires. These have mostly been the result of my cousin being a disbarred neurosurgeon (one of the disconcerting things about being awake during neurosurgery is that you can hear the surgeon say “Oops” in the middle of the procedure) and because my niece, being a teenager, has more important things to pay attention to than the details of her uncle’s neurocircuitry. So occasionally when a patient asks a dumb question the reptilian part of my brain overrides my Counseling Center and responds with something like “What a dope. Weren’t you paying attention to what I just neurotransmitted? I’ve already said twice that daughters can inherit a BRCA1 mutation from their fathers and that genes absolutely cannot skip generations.” A few patients have managed to integrate themselves into some of my dreams. It made for some awkward moments when a couple of patients managed to tap into the primal portions of my brain that house my implicit biases, fantasies, fears, and unfiltered thoughts. But hey, that’s to be expected in the pioneering stages of any world-changing technology. Kind of like Alexa “inadvertently” listening to your private conversations. Employers are not troubled by these occasional mishaps because all they care about is that I am counseling high volumes of patients and saving them oodles of money.

I don’t recommend other genetic counselors biotechnoconverting to ChatBob because I want all the business and I want to have the best presentations at national meetings. Plus, it is kind of a permanent thing, so you can’t just back out after using it for 90 days or whatever. And you have to do lots of explaining to skeptical TSA workers at airport security checkpoints. But these are small sacrifices to make in order to stay in front of the genetic counseling peloton. I will be seeing you in my rearview mirror for the next 10 years.

Thanks to Emily Singh for realizing the ChatBob graphic

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by | June 4, 2018 · 10:45 PM

Work Shift: A (Wrong?) Prediction

Genetic counselors are engaging in a bit of preening now that CareerCast has listed our profession as the top-rated career for 2018. Actually, it’s a bit of history repeating itself. Back in 1980, the genetics equivalent of The Neolithic, I learned about the profession when I came across an article in Working Woman magazine (now defunct, and not to be confused with Working Women magazine, which is still in circulation) touting the top 10 careers for the modern woman of the 1980s. My other time-killing choices that day were People, Reader’s Digest, and Ranger Rick. If I had picked up a different magazine, well, just imagine Ranger Robert. Funny how our lives play out.  Incidentally, even today, National Society of Genetic Counselor (NSGC) membership is 95% female, so that article in Working Woman really had its finger on the socioeconomic pulse.

Ranger Robert. Graphics by Emily Singh

 

The CareerCast story appeared just a few weeks after the publication of the latest Professional Status Survey (PSS) by the NSGC. The two pieces got me to thinking about historical changes in the employment picture of the profession and eventually, perhaps after a beer or two, a prediction popped into my head about a trending shift in who employs genetic counselors. I am not the first to notice the trend, so my contribution is to suggest the extreme to which the trend will run as well as its implications.

My prediction is that within the next 5-10 years, a significant majority of US genetic counselors will be employed  by laboratories and other biotech firms, in both patient contact and non-contact roles, and, to a lesser extent, by private practice groups that offer their services over the Internet or whatever communication technology is predominant in 2025. Until about a decade or so ago, the vast majority of genetic counselors were employed by private and academic medical centers. This is still true; if I am interpreting the 2018 PSS correctly, about 2/3 of genetic counselors are employed by medical centers, public hospitals, HMOs, private hospitals, and physician private practices. However, there were also changes in the percentage employed by laboratories and biotechs. In 2010, 10.5% of genetic counselors were employed by labs and biotechs. By 2018, that percentage more than doubled to 22.5%, and another 2% of genetic counselor were employed by telegenetics companies in 2018 (the 2010 PSS did not have an equivalent category). In other words, about a quarter of the current genetic counseling workforce is employed by labs, biotechs, and telegenetics companies.

There are several factors driving this trend. First off, more laboratories are offering direct genetic counseling services to patients and thus need to hire more counselors  – Counsyl and its new owner Myriad Genetics, Color Genomics, LabCorp, and Invitae, to name a few. Second, salaries of laboratory genetic counselors are typically a good 20% higher (plus more to be made in bonuses and stock options) than those offered by medical centers, making labs more enticing to prospective employees. Third, more medical centers and large medical practices are looking to include genetic counseling among the services they provide to their patients. Since genetic counselors don’t typically generate enough income to pay their costs, medical centers may be relieved to have a laboratory provide genetic counseling to their patients, either on site or via telegenetics. Clinics would bear minimal costs and labs would get a pipeline for specimens. This in turn will create a competitive environment among labs to offer their genetic counseling services to more clinics to ensure they maintain reasonable share of the testing market. A lesser trend will be the growth of telegenetic services offered by dedicated telegenetic counseling companies and individual private practitioners (together, currently 2.2% of genetic counselors). I suspect this latter group will be limited in its employment share, in part because they will have a hard time competing with the deeper pockets of large corporations. The net effect will be that the percentage of genetic counselors employed by medical centers will decrease significantly.

A natural extension of this trend is that bigger labs will continue to swallow smaller labs, and mega-corporations will swallow the bigger labs. Its hard to fight economy of scale. Konica Minolta owns Ambry Genetics. Eventually BGI may get in on the act (then watch out!). Heck, it’s not out of the question that many genetic counselors could one day work for Amazon (see my posting Sour Grapes, a dystopian satire about this possibility).

Both good and bad will emerge from these trends. More patients will have access to genetic counseling through telegenetics, whether from labs or dedicated genetic counseling companies. With genetic counselors on staff, labs and medical centers can be confident that testing is ordered and interpreted appropriately, improving patient care and reducing economic waste. More career opportunities will open up for genetic counselors as corporations recognize their skills and smarts. Salaries and other benefits will likely become more generous.

There is plenty to worry about too, at least for professional fretters like me. With more mergers and acquisitions, there will be fewer employers of genetic counselors and so the field will lose some of its practice diversity. Employers will expect their employees to adhere to certain business practices and philosophies unique to each employer. Practice diversity has been a rich source and testing ground for new and different ways to conduct genetic counseling. More concerning to me is the potential loss of  carefully considered patient decisions about whether to undergo a genetic test. Acquisitions and mergers are driven by the desire to increase market share and market penetration, not by an altruistic urge to ensure that patients carefully consider the benefits, downsides, and psychological impact of genetic testing (although undoubtedly labs support the right of each patient to make independent decisions). This will become even more concerning  as labs are subsumed by larger corporate entities that are further removed from the practice of medicine and the ethos of genetic counselors, generating real concerns about conflicts of interest. Another possibility is that large labs will either set up or help finance genetic counseling training programs. Why not have a steady source of prospective employees who can be trained to develop skills and a counseling approach that are shaped to a particular corporate milieu?

I acknowledge that this is a very America-centric view of the genetic counseling profession. This trend may not play out to the same degree, or at all, in other countries. On the other hand, telegenetics knows no borders. Conseil Gènètique Sans Frontières. Governments are looking for ways to cut health care spending in the UK, Canada, and Australia, among others. International mega-corporations – Big Genoma – can offer enticing cost-savings to legislators looking to reduce expenses without increasing taxes.

Of course, like most prophets and self-appointed pundits, my predictions will be off, and perhaps even laughably so. The thing about the future is that nobody knows what it’s going to be like. So if you disagree with me, or are outraged by my thoughts, take solace in knowing that I will likely be wrong yet again. But I think there is enough meat on this bone that it’s worth chewing over.

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by | September 21, 2014 · 7:21 PM

Who The Hell Do We Think We Are? 12 Questions About The Future Of Genetic Counseling

In the prophet business, they laugh at you when your predictions are wrong and chase you out-of-town – or worse – when your predictions prove to be correct. So, at the risk of being tarred and feathered or be made to wear a Scold’s Bridle, I venture twelve questions about possible future scenarios for the genetic counseling profession. Feel free to add a Comment with your own questions (and see how hard it is to be a prophet).

  1. Will our primary role be to serve as interpreters of test results for laboratories and ordering physicians? With the increasing growth of genetic laboratory services and a widespread lack of genetic sophistication among most ordering clinicians, laboratory demand for genetic counselors may far exceed employment in clinics. Besides, why should hospitals spend money on salary and benefits for genetic counselors when lab genetic counselors can provide the expertise?
  2. Might we become consultants for online genetic testing companies, helping plan, develop, and sell their products?  This could be a future where genetic testing is arranged over the Internet through a handful of megalabs, an oligopoly that controls the market. Such lab equivalents of Alibaba and Amazon, would sell gene products – clinical and otherwise – to an international market, where there is no clear-cut distinction between consumer and patient. This is not such an outlandish possibility; consider the connection between 23andMe and Google.This scenario sounds like the basis for a Philip K. Dick nightmare novel.
  3. Could we evolve into educators/communicators for the public rather than individual patients? With genetics predicted to be incorporated into everyday medical care, there is no way we can provide genetic counseling to everyone. But we could become a universal resource, developing and providing educational materials and expertise for clinicians, patients, courts of law, film makers, and just about anybody who has a genetic question.
  4. With institutions wanting to provide cost-effective care with as few employees as possible, along with the ongoing trend of hospital mergers and consolidations, could we become self-employed specialists who serve in consulting roles across multiple health care settings? We might strap on our NSGC issued jetpacks to hop from campus to campus of regional mega-hospitals to deliver genetic consultations on a moment’s notice.
    Genetic Counseling Jet Pack
  5. Will we change our profession’s focus from genotype counseling to phenotype counseling? In the past, a visit to the genetics clinic was necessary to sort through the appropriate genetic testing for patients, since it would be far too expensive to run every genetic test possible. With affordable multi-gene panels and whole exome/genome sequencing, it will no longer be economically necessary to see a geneticist to order “the right tests.” Just throw the whole plate of DNA strand spaghetti against the wall and see what sticks. The job of genetic counselors will then be to figure out what phenotype(s) could be expected from the array of test results.
  6. Will we become health/life style coaches? This is a natural progression from what we are doing now in cancer and cardiovascular clinics. Based on genetic test results we make  recommendations for health care and life style. Followed to the logical outcome, this model could be applied to almost any disease with a substantive, actionable, and identifiable genetic component.
  7. Will we be charged to be guardians of the public’s genetic health? With the introduction of Down syndrome screening of all pregnancies, universal carrier screening, and expanded newborn screening, there will be growing social pressure to “control and cure genetic disease.” This future could easily slide into creepy eugenic territory and provide Nathaniel Comfort material for several more books about the often vague distinction between relieving individual suffering and “population improvement.” This is not such an outlandish idea; James Neel, the great geneticist and a major figure in the early days of medical genetics, titled his magnum opus Physician To The Gene Pool.
  8. Will we be private entrepreneurs who offer our services directly to the public in GeneTruckshopping malls, pop-up counseling clinics, and mobile GeneTrucks,  bringing our services  to the public in non-traditional settings?
  9. Can we be all of the above and still maintain our unique professional identity?
  10. How will training programs properly prepare students for so many futures?
  11. Will there be a perception of less of a need for psychosocial skills? Will we lose sight of the basic truth that any interaction between two human beings is always a psychological interplay?
  12. Will the exploration of the human genome fail to  live up to its promise and hype, it’s low hanging fruit already plucked, and the current fad of genetic medicine replaced by some other medical breakthrough? Who knows, maybe gut microbiomes or epigenetic changes will be the next darling.  Would the genetic counseling profession wither on the vine?
    RIP

 

Special thanks to Emily Singh for her expertise in realizing the graphics in this posting.

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by | August 2, 2011 · 11:42 PM

Priorities For The Genetic Counseling Profession For The Next Decade

Lately I have been thinking about the future of genetic counseling and where the profession should be heading. What with busy work schedules, institutional budget crises driven by a shaky economy , and the emotional burdens of caring for our patients, it is easy to lose track of the bigger picture of what the genetic counseling profession should be striving for. So, over a beer (perhaps two), I decided to step back from the craziness of the workaday world and put together some thoughts about where I think our profession should be headed in the coming  years. The order of this Top Ten List does not reflect priority. In earlier drafts, I re-ordered the items so often as to destroy any test/re-test reliability. They are all critical, I guess.

Read the list. Argue some points with me. Think it over. Venture your own ideas in the Comments section. Have fun with it.

A “Top Ten” Agenda For The Genetic Counseling Profession For The Next Decennium

1)    Work on our relationship with, and develop a better understanding of how we are perceived by, people with disabilities, and their advocates.

2)    Integrate our services into the evolving landscape of widely available genetic testing for many common and rare genetic conditions.

3)    Develop, conduct, and publish a coherent research agenda about the process and outcomes of genetic counseling so we can effectively deliver genetic counseling in meaningful ways to improve the medical, psychological, and social well-being of our patients.

4)    Ensure that genetic counselors are covered providers in all pubic and private insurance plans so that every patient, regardless of socio-economic status, has access to our services.

5)    Educate ourselves to stay up to date in the rapidly growing field of genetic medicine, and encourage personal and professional growth.

6)    Develop and grow our counseling skills to ensure that all patients receive psychologically, emotionally, and culturally sensitive genetic counseling.

7)    Increase the demographic diversity of the profession to reflect our patient population.

8)    Increase the professional diversity of genetic counseling jobs and skills so that we are an integral part of all relevant aspects of clinical care, as well as policy development and implementation, laboratory medicine, academics, government services, and research.

9)    Encourage active involvement in our professional organizations (NSGC, ABGC), and with our relationships with other professional organizations, to ensure that we have a public face that reflects our priorities and that advocates for the profession.

10)  Maintain the highest quality in our training programs to ensure that the profession continues to be supplied with bright, thoughtful, ethical, empathic, and well-educated individuals.

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by | December 5, 2010 · 6:33 PM

Considering The Future of Genetic Counseling, Act II

When it comes to the future, there are three kinds of people: those who let it happen, those who make it happen, and those who wonder what happened.
John M. Richardson, Jr.

Those who predict the future are doomed to be wrong; just ask anyone at the race track or on Wall Street. But fear of failure should not hold us back; we have much to learn from error. So, to continue with the theme of the future of genetic counseling (see my previous posting), I will venture a few more guesses about the issues we should be considering when planning for tomorrow.

1. ) Safe and Legal Abortion Is Not Guaranteed For The Future : Abortion and abortion providers are under legal, social, and physical attack. It is not out of the question that Roe v. Wade may one day be overturned. Although it makes us uncomfortable to hear it, prenatal diagnosis is largely predicated on the availability of abortion.  It does not make economic sense to offer aneuploidy screening primarily to prepare parents for the birth of a

child with disabilities. If abortion becomes unavailable, insurers may be less likely to cover prenatal diagnosis, which could result in a dramatic drop in prenatal diagnosis job opportunities. And economic issues aside, is it morally justifiable to undertake the small risk of losing the pregnancy from amniocentesis or CVS simply because of parental anxiety or the desire for emotional preparation? You say that prenatal diagnosis can be important to long term developmental/medical outcome and familial adaptation. I say, aside from rare exceptions, the data is just not there to support your contention (and remember that the plural of “anecdote” is not “data”). So go out and do the studies and prove me wrong.

2) We Can’t Afford to Ignore Cost Effectiveness: Genetic counseling will likely come under increasing economic scrutiny. While I want to believe that our value to health care goes beyond dollar-savings, we nonetheless have to fiscally justify our employment and work loads. And, at times, we may be facing contradictory economic pressures. We will want to show that we lower healthcare costs by reducing the number of unnecessary genetic tests, ensuring appropriate medical screening based on genetic assessment, or whatever other means to demonstrate that we help produce a healthier population in a cost-effective manner.

On the other hand, we will be receiving subtle and not so subtle pressures from our employers to increase the number of revenue-raising activities. Back in the early 2000s, many centers, including my own, experienced a sharp drop in the number of patients who underwent amniocentesis, I suspect the result of  a social trend in changes in attitudes toward abortion and disability. At one point, my boss said only half-kiddingly “Bob, you are counseling yourself right out of a job.” Genetic counselors need to take the lead in conducting studies that show our cost-effectiveness while simultaneously demonstrating that we do not hurt our institutions’ bottom lines.

3) The Human Genome Project May Not Deliver On Its Promises: Genomic medicine is the medical technology du jour. All sorts of claims have been made about how genetics will revolutionize health care and cure everything from diabetes to the heartbreak of psoriasis. We have promised the moon. But what if the “genetic revolution” never comes? Or what if genomic medicine simply falls by the wayside as some new medical technology becomes sexier and more promising than genetics? Will funding for genetic research and clinical positions dry up? We need to stay alert to changes in other areas of medical care and adapt genetics to the changing practice of medicine.

4) The United States Will Not Be The Center Of The Genetics Universe: Until relatively recently, genetic counseling and genetic counselors have been concentrated in the US.  Although I haven’t tabulated the numbers, I am pretty sure there are more genetic counselors in the US than in the rest of the world combined. While many valuable contributions have come from Canada, the UK, both sides of the Tasman Sea, the Netherlands and other countries, the US has been the leader in the field (I will accept any criticisms of national chauvinism leveled by my international colleagues). But over the last 10-15 years, genetic counseling has spread to many other countries. New genetic counseling models will emerge as genetic counselors work in different cultural and geographic settings, especially  in non-English speaking countries. More international meetings, communication, and cooperative transnational research will be critical to the future of genetic counseling. The US model is one way of providing genetic counseling; it is not THE way, or necessarily the best way.

5) Office Visits and Flipbooks Are Soooo 20th Century: As Allie Janson Hazell and others keep reminding me, the Internet and e-technologies offer opportunities to reach more patients in a variety of ways. And as Vicki Venne recently pointed out, Millenial Generation students and patients are not going to stand for old fogey communication and teaching techniques. Some of us are just beginning to utilize the telephone to communicate test results.

I mean, come on, Sugar, it’s time to take a walk on the Wild Side.

We must open our minds and embrace, adapt to, and integrate new communication technologies to better serve our patients. Brick-and-mortar counseling has a critical place, but it may not always be the best way to ply our trade. And on-line genetic testing is not necessarily the spawn of Satan. We can’t – and maybe shouldn’t – control access to all genetic testing, but we can work to make sure genetic testing is used effectively and appropriately by patients and health care providers.

I hope I have provoked some of you into disagreement, thought, and action. Where am I off the mark? Which of my predictions are bound to be wrong? What are your predictions? How can we best prepare ourselves for the future?

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