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?

6 Comments

Filed under Robert Resta

6 responses to “Considering The Future of Genetic Counseling, Act II

  1. Laura

    Bob,
    You make terrific points. With respect to prenatal genetic testing, I think we need to seriously consider the likely availability of non-invasive prenatal diagnosis in the near future. That will significantly reduce the costs and risks associated with prenatal diagnosis, and could move the vast majority of testing into the first trimester–a time when abortion is least likely to be restricted. It will also change our roles in a very big, and as yet undefined way. When this testing arrives, it won’t be possible for us to see everyone for pre-test counseling. Who will we counsel, when, and how?

  2. Heather

    Bob,
    Very interesting post! It made me think of something, and although it might not quite be on topic, I’ll post it anyway!
    I would like to see genetic counselors taking a more prominent role in primary care. As a prenatal counselor, there have been so many times that I’ve taken a family history for a patient seen for advanced maternal age and there’s a genetic condition in the family. Sometimes these are single-gene conditions and no one has ever told the patient it’s genetic, or doctors have tested for it but never explained reproductive risks. I think that everyone should have their family history taken by a genetics professional when they first meet their family doctor (or PA, NP, whatever), and at least every 5 or 10 years after that, or when there is a new diagnosis in a family. If you think about it, what is the rationale for us to take a thorough family history for someone who is 40 years old and pregnant, rather than for someone who is 25 years old and pregnant and who never gets referred to genetics? As well, if a genetic counsellor were physically situated in a primary care clinic, the doctors would also be more likely to run cases by the GC and make appropriate genetics referrals. With the common disease susceptibility genetic testing becoming more mainstream, this would be a great way to make this a more useful tool, in the context of family history. I have heard of this model starting up in certain pockets of the US, and I’m wondering how mainstream it will get.

  3. Meadow

    Great article Bob.
    I like your point “The Human Genome Project May Not Deliver On Its Promises”. I have often been concerned about the expectations that the general public has regarding the Human Genome Project. I see in the media repeated mentions of the Human Genome Project and how this information obtained will allow the gathering of information regarding common diseases and eventually a cure. While I do think the Human Genome Project has and will advance genetic research I think the impact on health care has been over sold to the general public. I often have patients ask me about when a cure will be available for a specific condition. Sometimes it is a single gene disorder but is other times a common multi-factorial disorder for which causitive genes haven’t been identified yet.

    It seems that the public’s expectations about the result of the Human Genome Project can be unrealistic. I find in conversations outside of the genetics field that people think the advances will happen much faster than what seems realistic based on what we know right now. We really don’t know when or if we will see an impact on the general public. Will it be in our lifetime? What happens 10 or 20 years from now if the public doesn’t see a impact on their life? Will the interest in genetic research and clinical genetics decline? Will people become skeptical about genetics in general? And what will the impact be on genetic counselors?

  4. Robert Resta

    Laura, Heather, and Meadow raise some good points.

    Noninvasive, early PND is seductive. Some criticisms may be raised, though. First off, it will likely result in higher termination rates; abortion decisions are always difficult, but get even more difficult as pregnancy progresses. Critics of PND will understandably claim that this results in further discrimination against people with disabilities, and smells even more of eugenics (oh, that word!). Second, women will be undergoing a medical procedure to terminate a pregnancy that would likely end on its own within a few weeks. Should woman take on these admittedly small but nonetheless undeniable risks of a medical procedure in these circumstances?

    In terms of the possibility of unfulfilled promises of the Human Genome Project, Kim Quaid et al. have a nice article (http://www.ncbi.nlm.nih.gov/pubmed/20734119) in the most recent Journal of Genetic Counseling about reproductive decisions of people at risk for Huntington disease. In the Discussion section, the authors describe a poignant discussion with a patient who now felt embittered by the promises of a not-so-far-in-the-future cure for Huntington disease about 20 years ago when the gene was first discovered.

    Greater involvement with primary care providers is a great idea but there’s no way we can be in every medical office in the country. This is where new communications technologies can offer great opportunities for making our services available in many ways.

    Get out there and shape the future, everyone!

    Thanks to everyone for sharing their comments. Keep’em coming!

  5. Benjamin H.

    Although I am not too familiar with the research, I think it is logical to assume that large parts of the U.S. patient population do not have adequate access to genetic services or genetic information/expertise. I think Heather’s comment reflects an ideal that I have often thought of, that is, somehow finding a way to blend something as basic and necessary as genetic services (in my opinion) into primary care. Doing so not only provides better access, but it also increases the general population’s exposure to genetics and raises awareness and education (one would hope). That being said, it is implausible to expect a genetic counselor to be in every primary care office or rural hospital. In addition, we need to expect the physicians’ awareness and knowledge of genetics to also be adequate enough to actually refer for our services.

    I have often thrown around the idea of regional ‘pockets’ of genetic counseling services (as I think was being experimented with in the U.K.) in the U.S., especially in non-coastal areas. They could be placed in rural areas, where clinical and educational services would be emphasized, and this could also spur knowledge/awareness of the need for genetic services (also affecting their demand).

    Of course, I have not expanded on this, and much of it remains idealistic (maybe?).

    Either way, with the human genome project and with the rapidly progressing genomic knowledge, I think general demand for these next-generation services will increase. Despite what promises the HGP made, a clinical genetics will continue to trend toward genomics, and genetic counselors will have a role in it.

  6. Wow.. written in 2010… it all came true… didn’t take long.

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