What Do We Mean By “Psychosocial” in Genetic Counseling?

Genetic counselors are proud of the psychosocial component that we claim to bring to patient care. Hey, we’re not just programmed human chat boxes, clever information-givers, or educators. We attend to the emotional and psychological needs of our patients and strive to transform our sessions into something closer to a psychoeducational experience, sometimes with psychotherapeutic effects. All that “psycho-” is what transforms genetic counseling from a cold clinical encounter into a humanistic endeavor.

Hence many readers may be upset when I suggest that we retire the sacred word “psychosocial” from our vocabulary. This bug was put in my ear by my esteemed colleagues Barb Biesecker, who has enough publications to fill 3 careers; Jehannine Austin, a world leader in psychiatric genetic counseling; and Laura Hercher, Renaissance woman and host of the genetics podcast The Beagle Has Landed.  I am authoring a chapter for their soon-to-be-published book (Genetic Counseling: Clinical Practice and Ethical Considerations, in the Cold Spring Harbor Laboratory monograph series Topics in Medicine). When I submitted my chapter they asked me to remove the word psychosocial from the text. Similarly, Barb Biesecker, Kathy Peters, and I are co-authoring a genetic counseling textbook to be published this Fall by Oxford University Press (Advanced Genetic Counseling: Theory and Practice), and “psychosocial” was dropped from that text too, unless my Find and Replace function missed a few instances.

It’s not that I or they think that genetic counseling shouldn’t have a psychological component. On the contrary, I and they think it is a defining element of our profession, even if in practice genetic counseling may be “less psychosocial” than we say it is. The point of contention is that “psychosocial” is too imprecise a term to be meaningful in a research or outcomes kind of way in the context of modern genetic counseling.

The term “psychosocial” arose in the social work profession in the early 1940s and is usually attributed to Gordon Hamilton, an influential Columbia University social worker. The aims of the psychosocial approach in social work are to “restore, maintain, and enhance the personal and social functioning of individuals through mobilizing strengths; supporting coping capacities; building self-esteem; modifying dysfunctional patterns of thinking, feeling, and relating to others; linking people to necessary resources; and alleviating environmental stressors.” You can see how this fits with what genetic counselors claim to do.

Historically speaking, it was natural for the fledgling field of genetic counseling to borrow some of its vocabulary from social work. Sheldon Reed famously and vaguely defined genetic counseling as “a form of genetic social work.” Joan Marks who, along with Melissa Richter, established the first genetic counseling training program at Sarah Lawrence College in 1969, was a social worker and perhaps this is where the term reflexively entered into the genetic counseling lexicon. Particularly during the first two decades of the profession, not a few genetic counselors were social workers (In my younger years, when there were far fewer genetic counselors, I was professionally acquainted with at least five social workers, two of whom helped train me). The psychosocial approach helped give genetic counselors a raison d’être that set us apart from clinical geneticists and provided a focus to our training and the care that we provide. The psychosocial paradigm in genetic counseling is embodied in Jon Weil’s 2000 classic text Psychosocial Genetic Counseling (Jon, by the way, was a psychotherapist, not a social worker).

But those were the early days when we provided a limited service to a narrow segment of the patient population. The psychosocial component  gave us a leg to stand on but now it seems like more 0f a crutch. At a half century old, genetic counseling can no longer be considered a new profession. The average age of its practitioners is much less than the age of the profession itself. Genetic counseling is now better characterized as a mature specialty. It’s about time we stood on our own two feet. I celebrate the outstanding work done by social workers but genetic counselor are not social workers, and vice versa.

Deep down, the fuzziness of the term has always made me uneasy. And let me tell you, Barb and Jehannine, two of the most passionate genetic counselors I have ever met, have far stronger criticisms of “psychosocial” than just its fuzzy qualities. Although a dictionary will provide a definition, in the setting of genetic counseling its unstated meaning is something like “those components of a genetic counseling session that are not strictly educational or technical.” It tells us nothing about assessing the effectiveness of the components or outcomes of genetic counseling; or how to improve them; or how to develop a scientific foundation for teaching, applying and researching genetic counseling; or how we can contribute to basic research into the human mind and behavior. For decades, genetic counselors were very poor at demonstrating their utility or effectiveness or at investigating those aspects of our service that were beneficial, harmful, or useless to patients (except in the Netherlands, which has consistently produced some of the best genetic counseling research, and a few other select researchers). This may have been in part due to the imprecision of the term “psychosocial.” That needs to change.

No doubt many of the good readers of The DNA Exchange will be angered, upset, and confused about the proposal to drop psychosocial from our vocabulary. And just plain disagree. Well, good. That’s one of the reasons I write this stuff. I want us to get worked up about genetic counseling, think hard about it, question its very core, and engage each other collegially. Those are the sorts of reactions we should have if we are as passionate about genetic counseling as Barb and Jehannine are and if we want to deliver the best possible patient care.

 

19 Comments

Filed under Robert Resta

19 responses to “What Do We Mean By “Psychosocial” in Genetic Counseling?

  1. Liane Abrams

    Bob,Like always a terrific and concise commentary on another facet of genetic counseling that has “grown old, and not gracefully”. And like almost always, I wholeheartedly agree. When I recently had a new counselor shadow me on a couple of pretty ‘heavy” cases, afterwards she commented “those were the most psychosocial cases I ever saw”. And though I knew what she meant, I also knew it was time to retire that term. But my struggle was, with what to replace it it? How do we coin the psychological, emotional and social impact of genetic conditions on individuals and families? Would love to hear other’s thoughts on the more precise term(s) for this aspect of our work, taking into account the dynamics with our patients that are different from (but include) social work, psychology, education and grief counseling.
    Liane

  2. Colleen Caleshu

    Yes! Can we please bury it in a deep grave next to non-directive?

    • Barb Biesecker

      Yes!! Jehannine and I were bemoaning how impossible it has been to bury ND–which was started nearthe beginning of the profession and STILL lives to the detriment of our clients. ND is often interpreted to mean not to persuade or influence and when you do not want to do those things you withdraw or disengage, you are afraid as a GC of doing something inappropriate. It handicaps us when we should be joining and partnering with our clients
      Psychosocial is not really harmful. It is simply sloppy use of language. It is limiting. Words to use instead I do not find hard to come by: Psychological which refers to cognition (thoughts), affect (feelings) and behavior. And social can refer to the broader community, family and friends and clinical communities where our clients reside or where the genetic information has implications or may at least become a shared experience. And social psychology is the science of people and how we think and behave among one another. Guess what, we are somewhat predictable. All GCs should know that literature–it allows us not to be surprised when our clients act in ways that are well recognized, like making irrational decisions or using hueristics rather than precision to make sense of probability.
      Jehannine published her proposal that we adopt psychotherapeutic GC because the psychological work with do with clients overlaps the formal definition. So i have moved from psychoeducational (because we do way too much education and not psychological work–that is not an opinion but based on published evidence) and our counseling expertise is essential to survival of our profession. Our clients can learn relevant information from really well designed interactive platforms and there will be more and more of them. But how you process that information, and what it means to you and your family and how you manage the health threat it represents, that is psychological. And to help people grapple with that is to be psychotherapeutic. Words matter.
      So if you are working with clients about their thoughts, feelings and or behavior, that is psychological counseling. And if you are helping them to find personal resources and to be their best selves in hard circumstances, you are being psychotherapeutic.
      What is different about these words is that they have been in existence for a very long time and disciplines have been built on them. So there is scholarship, practice models, theories, and EVIDENCE that can be used to inform and assess genetic counseling. Psychosocial does not represent a discipline or a way of practice. And it’s a short cut to say psychological and social together–it is not a word that garners respect nor does it link us to existing scholarship. We need to integrate our research with these well respected disciplines because what we do is not unique. It differs but many other great thinkers have gone before us and have a lot to teach us related to the counseling work that we do.
      Bob can always light a fire under me.

  3. Amie Blanco

    Agree, BUT: how do we define the non-educational and non-technical components of genetic counseling? Don’t we also need to remove ‘counseling’ from the lexicon too?

    • Barb Biesecker

      Sorry, I cannot follow your logic. Call the non-teaching elements psychological counseling components. We teach our clients and we counsel them. You do not need the word psychsocial (I have not once in my career used that word to describe my work–I have no idea what it means other than the merging of the words psychological and social).

  4. Anne Spencer

    I agree with Amie–I am not ready to discard the term until we have something better to replace it. And if we feel the need to dismiss the term “psychosocial” because it is too vague and already belongs to another profession, then we should really also reconsider our use of the term “counselor” and probably “genetic” too. After being in the field for 3 decades I still find myself explaining what a “genetic counselor” does and I still force myself to make that awkward fake smile when people ask if I “tell genes what to do.” Frankly, I hate that way more than the term “psychosocial.”

    • Kevin Capehart

      I would propose that we don’t need to replace the term “psychosocial” at all. To me, taking care of the psychological, emotional, and social needs of a patient is just good healthcare.

      • Barb Biesecker

        Terrific post. That is a fine way to think about it.
        My only addition would be that other words to exist that link us to decades of relevant research that can inform our work if we take advantage of the theory and evidence.

  5. Megan

    I agree with some of the other responses…I’m ok to replace psychosocial but with what and DEFINITELY ready to replace no-directive.

  6. Liz Kearney

    It’s smart to constantly assess descriptions of any profession as they evolve. In the search for a replacement for the term, I would still consider what is happening in other fields. In the era of powerful computing capabilities and artificial intelligence, physicians are starting to search for words to describe the purely “human” interventions that clinicians make that cannot be replaced by computers. I watch these discussions closely and have not yet seen a phrase or word emerge as a sole winner, but we may see one in the near future.

  7. Kathy Morris

    I’m not going to vote, but wonder what my esteemed colleagues (Bob, Barb, Jehannine, others) suggest as alternative way to describe this aspect of genetic counseling practice which is not “fuzzy” and which would facilitate the research to which you alluded.

    • Barb Biesecker

      Psychological counseling, and when you do work to help people better themselves through their genetic circumstances, psychotherapeutic.
      i find it so interesting that these words do not come to mind. Why do you think that is?

  8. Shannon Ryan

    I like the term psychosocial even more after reading the definition that Robert posted in the blog: “restore, maintain, and enhance the personal and social functioning of individuals through mobilizing strengths; supporting coping capacities; building self-esteem; modifying dysfunctional patterns of thinking, feeling, and relating to others; linking people to necessary resources; and alleviating environmental stressors.” We do a lot of the elements that are included in that definition and I feel psychosocial fits better than psychological or psychotherapeutic counseling. I do agree with doing away with non-directive however.

  9. Heidi

    I wonder if using the terms psychological and psychotherapeutic counseling would get us in trouble in legal terms of scope of practice and the degrees generally considered necessary to practice these entities.

    • Barb Biesecker

      See Austin et al. 2014 in JOGC. Our work directly overlaps with the definition of psychotherapy. We are not claiming that we conduct psychotherapy but our work can be psychotherapeutic. If we billed for care as a psychotherapist, yes we would not be found eligible for reimbursement. But there are important reasons to use more recognized terms that represent disciplines and research scholarship to label the counseling components to our work. The social work description of psychosocial is not backed by evidence, theory, or decades of writings as are psychological counseling and psychotherapy. It is merely a description of a helping profession that could apply to many. It is not wrong, but it is insufficient.

  10. Mike se

    Thanks very much Bob for your thoughtful post.

    I dislike “psychosocial” as a term primarily because it often ends up being seen as an (optional) tool rather than central to our practice – I find “psychosocial” skills and considerations relevant whether I am discussing inheritance (“education”) or counseling about grief (“emotional”).

    I like ‘psychotherapeutic’ as a way to describe our practice, because it has the ability to encompass all we do. ‘Psychosocial’ really only aims to identify a subset of issues or skills.

    I think ‘psychotherapeutic’ concerns people because they think the term may imply we conduct psychotherapy. I don’t believe this is an irrational concern. We do not diagnosis and treat mental illness, and it’s possible some professionals from mental-health fields may feel we are over-stepping if we start using this term (although I have no evidence to support this).

    I think the other concern is that some genetic counselors feel uncomfortable practicing ‘psychotherapeutically’ because 1) they feel inadequately prepared or 2) they don’t think it’s within our scope of practice. This will likely pose a much larger barrier than anything from other professional groups.

  11. Lovely read as always and thought provoking,Bob! It amazing to see how the profession has grown in leaps in the US as compared to other countries. I use the word psychosocial to define issues or elements other than scientific or technical aspects. For non- educational part of our job, I think it can be categorised as psychotherapeutic?

  12. Robert Resta

    Great comments all. Glad to see that the posting has made readers think hard about the issue. I also want to point out the 2006 NSGC-endorsed definition of “genetic counseling” does not include the word “psychosocial.” Actually, I think it was approved in 2005 but published in 2006. But never mind those details. The point is that we have managed to survive for 13 years without including the word “psychosocial” in the guiding definition of our practice.

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