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.

21 Comments

Filed under Robert Resta

21 responses to “Who The Hell Do We Think We Are? 12 Questions About The Future Of Genetic Counseling

  1. Definitely agree with #1. Not sure how training programs will adapt, but they will certainly have to as they are extremely clinically focused at present.

    P.S. Great graphics.

  2. Great article. As part of the pioneering students for genetic counseling in the Philippines, this is something to ponder about. Thank you!

  3. Incredible article! Very Insightful. I have to give a presentation in the new year about the expanding role of the genetic counsellor and these questions are spot on to encourage people to think about it!

  4. Philip Reilly

    Very insightful questions. Thanks. Phil

    Sent from my iPhone

  5. Sonia Margarit

    Great questions!! As the only genetic counselor in Chile, I ask myself the title question almost everyday! I agree most with question number 3!
    At least for now we need to educate and create training programs taking into account all the others questions posted in mind.
    Please keep plucking and awakening us with these and others still unknown issues to keep us from falling asleep in comfort zone!
    Thank you!
    Sonia

  6. Beth Balkite, MS, CGC

    Great article. A few more questions:
    How are future genetic counselors going to be trained when so many of the experienced people are moving into industry? Is there going to be a shortage of people in clinical placements to supervise students? Are people entering the field today for different reasons than in the past: i.e. Is this still a profession or just a job for some?

  7. Beth Balkite, MS, CGC

    One more question: is it the training programs who need to change to meet this demand, or is it the ACGC that sets the standards for the training programs who need to broaden the areas students can be placed in for their log book of cases?

  8. Bob, I assume you have seen the Who’s Your Daddy truck (not a photoshop)? If not, check here:
    http://acculturated.com/the-whos-your-daddy-truck-and-our-culture/

  9. Robert Resta

    Thanks Sonia and Jasper. I am very interested in hearing comments from the international community. I suspect that genetic counseling will follow different trajectories in different countries in response to local economics, politics, culture, and medical traditions.

    Beth – Planning a genetic counseling training program is so difficult. You wind up mostly training students to do what you did when you were a practicing genetic counselor. It is difficult to prepare them for a future profession that may look nothing like what most of us were raised in. I am confused about who sets standards these days for education of genetic counselors. But it strikes me that this might be a time to resurrect the discussions about the role of a doctorate or PhD in genetic counseling. I could see labs preferring to employ highly trained individuals, given the complexity of genomic medicine. But I suspect that labs may want those people to also have experience working with patients, since hands on clinical experience with the Byzantine details of genetic testing and interpretation is what makes genetic counselors ideal candidates for many lab jobs. Maybe in our “Reality” TV culture future genetic counseling students will be selected on a Reality TV show – America’s Next Top Genetic Counselor. Throw’em in a hotel together for a few weeks, give them some outlandish counseling challenges, and let the judges and the viewing audience decide who gets into the programs.

    Laura – I had not heard of the Who’s Your Daddy Truck. I spend so much time fretting about the future and all of a sudden I look up and the future already happened a while ago when I wasn’t looking. It’s hard to be a satirist when the real world is more satirical than my imaginary world.

  10. Anonymous

    As our profession evolves, I think it is especially important to focus on the fact that we CAN’T see every single person in need of genetic counseling. We just can’t. It’s unreasonable to demand that we do see everyone, especially with the evolution of panel testing and whole exome/genome sequencing. Rather than do the traditional thing, we should evolve along with the rest of the medical community and position ourselves as the expert resources in the community, using our skills to help the complicated cases. With all these panel tests and options out there, there are plenty of “complicated” and “surprising” results. Rather than focusing on and expending energy on the doctors who are “doing it wrong”, we should be out there educating them and proving that we respect their right to care for their patient and want to partner with them to help do that. There’s no reason the doctors can’t learn how to properly discuss any genetic testing with their patients… The majority do already with many prenatal tests. The problem is that so many don’t WANT to be educated and are going to do what they are going to do assuming they know everything. We as genetic counselors need to stop pointing fingers at labs and acting like we’re better than the physicians and instead integrate ourselves into the circle of care.

  11. Jon Weil

    What we must accomplish as a profession is analogous to what we strive to help our clients accomplish – adaptive growth, consistent with one’s fundamental values, in the face of difficult and often rapidly changing circumstances.

    As a specific suggestion, in my chapter on Resistance and Adherence (Weil, 2010) I discuss the relevance of genetic counseling skills to a major problem in medicine and healthcare: patient nonadherence to referrals, prescriptions and recommendations.

    “The methods for increasing adherence discussed in the medical literature are identical to central components of genetic counseling: … Provide information … tailored to the patient’s knowledge and concerns. … Include and support the patient in decision making. … Support patient autonomy and competence. [etc.]”. (p. 170)

    This concordance provides another basis from which to promote our expertise in the evolving medical and healthcare environment.

    J. Weil, 2010. “Resistance and Adherence: Understanding the Patient’s Perspective”. in B. S. LeRoy, P. McCarthy Veach and D. M. Bartels (eds.), Genetic Counseling Practice: Advanced Concepts and Skills. Wiley-Blackwell.

  12. Love these thought-provoking questions. I think #1-4 are already becoming a reality. Our challenge as a profession is to be ready for any or all of the above while still paying special attention to #9 and #10 (maintaining our professional identity and training our new GC’s well).

  13. I absolutely agree with previous comments that we as genetic counselors should not be so narcissistic to think that we should be the only ones ordering genetic testing, because it’s just not realistic. Aside from the fact that there are not enough of us, physicians do not want to be told what they can or cannot do. See ASCO’s statement regarding Cigna’s genetic testing policy: http://www.asco.org/advocacy/new-cigna-policy-cancer-genetic-testing-poses-risks-high-quality-cancer-care.

    BUT I think that only half the battle lies in educating non-genetics professionals (aggressive lab marketing aside). Equally, if not more important, in my opinion, is how we differentiate ourselves from other health care professionals who are ordering testing and doing “genetic counseling,” whatever that means. Personally, I don’t want my job description in the future to say “genetic testing facilitator” or “genetic testing interpreter.” I see genetic testing is a TOOL to understand health risk and disease; it doesn’t have to be the goal of genetic counseling. I also do not believe that our role as genetic counselors is to merely educate people in a didactic manner. Alternatively, I think we should view and market genetic counseling as a “therapeutic encounter” and I would strongly encourage everyone to read this paper: http://www.ncbi.nlm.nih.gov/pubmed/24841456

  14. Rob,
    I think yes to almost all of your questions. Industry is driving things to a greater extent right now. Lucky for industry, it is reaping the benefit of counselors whose clinical expertise has costed the medical system (yes many programs hardly covered the costs of their counselors over the years and still do not, our best kept secret), which is becoming less and less able to support this. The solution is complex, but there has to be one.

    As an optimist, I believe that there is a role for genetic counselors in all arenas. I do believe that at role of the laboratory genetic counselor is narrower than yours. Laboratories and testing companies are not licensed in the practice of medicine. It’s a fuzzy line, but the explanation of genetic test results needs to stay on the right side of the line and the law. With test reports (often lengthy, interpretive and lab director or physician signed), explanation of a report, whether done by a genetic counselor, someone with a degree in veterinary medicine or nutrition can be very helpful and often comprehensive and all that is necessary… although done best by a genetic counselor, we know that. When the explanation goes beyond the report…. that becomes genetic counseling…. and the question is… do laboratories have a right to sell genetic counseling….

    I don’t know the answer to that. I do know that few have considered this or are not sure how to think about it. My own state, New York is concerned about this. As part of a group involved to garner licensure for NY ( been working on this for only 20 years now), the Board of Ed. in NY asked this year that that our proposed licensure bill include a clause dis allowing the corporate practice of medicine. That would have meant that ANY laboratory or testing company that employs genetic counselors would not be legal in the state of New York. This is huge… John Richardson was at the table with us when this was requested, at which time we took everything off the table. The NSGC is supporting our efforts and John is working with NY and our group to help develop a compromise. The profession as it is moving and the jobs of maybe a quarter of our profession, were at stake here.

    What concessions will need to be made and whether we can get licensure are yet to be decided. But nonetheless, the role of the genetic counselor working in a lab.. is being looked at carefully as we acquire licensure. The concern was probably always there. If any other medical specialty ever wanted to call out a testing company or genetic counselor for infringing on their medical scope of practice, by the work we do, there could be a case, I have been told.

    Presently, counselors who speak to the reports before them without providing medical advice (which was never in our scope of practice), may be OK.
    So for example, to say: As stated in your report, this NIPT test has a PPV of 45%, which means that about one out of two women with results like yours will have a pregnancy affected with XX. As explained in your report, ultrasound and other studies performed by your doctor or follow-up invasive testing could provide your more information. Also, it sounds like you are telling me that you have a condition called spina bifida, two children with muscular dystropy, a daughter with cleft palate and mental retardation ( so glad that phone counseling is available for you ) but all of this needs to be addressed separately through your doctor or Bob Resta GC over at Swedish Medical.

    The script will vary based on the laboratory product, but there is a way to do it, and it should not be directed by MBA’s and CEO’s without our (siignificant) weigh in, no matter what your benefit package looks like, (compared to Bob’s).

    I am sure that more is addressed by phone discussion between lab counselor and client (remember they are really not your patient unless you are providing medical care, by definition, and neither labs nor counselors within the scope of our practice, are providing that), with patient’s questions being what they are, part of the sell of testing products to physicians being tied to ready GC access, and therefore companies demanding explicitly written GC notes. (If you are working at a hospital, carrying a package of scripts signed by the doc you are working with, and/or the patient has seen the doctor too, maybe you, like Bob, can say this). It is complicated (and should be) as to what can and should be said and how best to document, for laboratory and testing company counselors.

    I do believe that there is room for everyone, that those lab counselors who are less vintaged to clinical work need to heed the concerns voiced here, and that everyone keep a close watch on what the business of genetics is demanding that prevails on the integrity of our profession. Let’s keep vigilant during these exciting and crazy times in our field, and never loose sight of the fact that we are here to help and here for patients (yes , I said it).

    S.Bonnie Liebers CLGC
    Director of Clinical Services
    http://www.geneticcounselingservices.com

  15. Colleen Caleshu

    Thanks for a thought-provoking read, Bob. There’s one way of considering our current and future role that I was surprised to see you leave out: psychotherapeutic care-givers who specifically address the psychological needs that genetic risk or disease create. I work in a large team of non-geneticist, non-genetic counselor healthcare providers (cardiologists, advanced practice nurses) who are all experts in genetics and very capable of providing genetics education, appropriately selecting and interpreting genetic tests, drawing pedigrees and providing family screening recommendations. Sounds like I should be out of a job, right? Quite the opposite! Our genetic counseling team is growing rapidly and both my team and the families we care for highly value the service provided by our genetic counselors. One reason is that while my coworkers are very skilled in the areas I mentioned above our genetic counselors are still the experts and leads in each of those areas. Another big reason is the psychotherapeutic nature of the care we provide to families. I think this is a critical piece of our future. Two genetic counselors who I admire immensely have said it much better than I ever could: http://youtu.be/-jwj6mtAZUc and http://www.ncbi.nlm.nih.gov/pubmed/24841456

  16. Barb Biesecker

    As always Bob, you have us thinking and that leads to ideas and agents of change. Thank you!
    Genetic counseling has struggled with its identity since its origins. We began serving needs that arose but we were not clear (or united) on who the hell we thought we were. Over the years genetic counselors have been described as abortion promoters of affected fetuses, enemies of the Down syndrome (disability) community for contributing to the extinction of others like their loved ones, praised as physician extenders (ugh), information providers, the bridge between geneticists and patients (ditto ugh), test providers/gate-keepers, and really nice women whose patients are always satisfied when asked. We have existed in a perpetual identity crisis.
    It is our smarts (programs are small with high standards), flexibility, ideas, creativity and our excellent people skills that have kept us in the game. Now we are designing positions when a need is identified. We are approaching consulting companies and announcing that they need us, embracing companies who value genetic counselors and learning sequence variant interpretation “on the job” as we are hired by testing companies. These jobs greatly exceed what we have accomplished in the past and present a much broader array of positions available in the profession. It is a sign of growth and success. Diversification is key to survival.
    As a program director, it is not THAT hard to keep the curriculum current. Mastery of the principles of human genetics, field of clinical genetics, high level therapeutic counseling skills, and research expertise remain the same in this new dawn of the genomic evolution. We do now need opportunities to learn sequence interpretation as it is the testing of our future. And our emphasis on public health and policy is important in situating genetics in our health care system. We historically have encouraged achievement of a PhD to gather the evidence to guide our practice so this is not novel but invaluable.
    At the base of all these skills is the ability to form a meaningful connection with our clients; to be able to discern their needs, values and beliefs related to the circumstance before them. Testing is merely a tool and it is increasingly confused as a goal of genetic counseling without proper context–risk assessment and identification of potential clinical options. No matter how much data is assembled for people to manage their health along with their primary care providers, there will be concerns about what the information means to me, for me and about me. Genetics has expanded but people are not that different.
    As I said in my remarks at NSGC, if we lose the focus on our clients and the need for a therapeutic connection that is meaningful to them, then our future is indeed tenuous. Changes to the degrees we offer and perhaps levels of training will not threaten our status if we take excellent care of clients; not simply to “satisfy” them but so that they feel understood and are better equipped to use genetic information to make informed and meaningful choices in their lives. This is the core of who genetic counselors are and how we are valuable practitioners in the face of significant change. As the context swirls and expands about us, it is what and who we are and must be or your tombstone awaits us. Regardless of the forces of change, I choose to be optimistic that enough genetic counselors understand and promote the essential nature of our relationship to our clients that we will live a long life after many of us are no longer around as prophets envisioning our future.

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  19. Anna

    I recently had an appointment with a Genetic Counselor. At best, she was a sales girl, but not a scientist. She kept pushing me to do the expensive tests that were the most profitable for her stupid Fetal Maternal Clinic. I also went to a lecture by a genetic counselor, who was very incompetent and knew very little about genetics. From my personal experiences, Genetic Counselors don’t really know enough about science to tell patients what to do. They don’t have a PhD, and they are not MDs. I truly hope they will disappear from the medical field. There are enough things that expectant mothers need to worry about, and we don’t want to be ripped off by greedy Fetal Maternal Clinics for sure. At the end, all these new tests only benefit biotechnology companies.

  20. Anna, from July 31. At the risk of incurring the wrath of you and those who feel so frustrated… I’m so sorry for your disappointing experience. Please feel free to contact me for courtesy discussion, http://www.geneticcounselingservices.com The testing that you had can be difficult to understand for many. It requires a bit of skill to put things into perspective for each patient, and I’m guessing that a group session or lecture did not leave you informed. Often genetic counselors have specific expertise, but are called to attend to areas that are outside of their main focus, so perhaps that is what happened. Genetic Counseling Services is dedicated to organizing teams of Genetic Counselors who are prepared for very specific laboratory and other assignments. I’m guessing that a little more education and insight that a personalized genetic counseling session would provide, would help to redeem what you think about my profession of 30 years.
    Sincerely,

    Bonnie Liebers

  21. Anna, I’m a PhD geneticist. And I know Bonnie Liebers well. She knows so much that I turn to her with clinical questions and concerns. Genetic counselors with lowly master degrees in fact know more than I do, and I’m the author of the human genetics textbook that most college students use and have published thousands of articles. Genetic counselors with masters’ degrees quite often know considerably more than MDs, especially the older ones who might not have kept up in genetics beyond the course or two they had in medical school. A genetic counselor one-on-one will spend an hour with you and follow up as much as needed — that is what I do when I counsel for an ob/gyn practice. You’re lucky to have a few minutes with an MD. I too am sorry you had such a negative experience, but I think it is unusual.

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