You will not find these pearls of wisdom in Psyche and Helix, Psychosocial Genetic Counseling, A Guide To Genetic Counseling, or the Journal of Genetic Counseling. I am certain that they will never be the source of correct responses on genetic counseling board certification exams. These insights are based on personal observations made during my 3+ decades of genetic counseling practice. There is almost no research to back them up but they are gospel truth nonetheless. Well, at least they seem true.
1) All interactions with patients are primarily psychosocial encounters, no matter how much we or patients consciously or unconsciously try to focus on facts and figures.
2) All research studies are flawed in some way. Therefore, all facts, figures, and risk predictions that we so confidently quote are wrong, with the possible exception of Mendelian segregation ratios (but even there…). Quite often, several seemingly well designed studies about the same topic will produce conflicting results.
3) Which risk figures we choose to quote reflect more about our own unconscious biases, training, and professional influences than it does about the robustness of the statistics themselves.
4) It often turns out that patients with the lowest a priori risk have the highest chance of actually testing positive for a gene mutation and, conversely, the highest risk patients actually have the lowest chance of testing positive for a gene mutation (and I am not altogether making this up).
5) In a family that looks like it could have two different genetic syndromes, one syndrome highly likely and the second syndrome fairly unlikely, if you don’t test the family for the less likely syndrome they will inevitably be tested by another care provider some day and test positive, and then you will foolish and insecure (especially if the other care provider is not a geneticist). But if when you initially see the family you do the testing for the less likely syndrome, the testing will be normal and you will kick yourself for wasting healthcare dollars. Perhaps this is a corollary to Rule Number 4.
6) As I have previously pointed out in The Resta Paradox* there is a sub-set of patients who believe that the most improbable things will happen to them. If you say to such a patient “The odds of this happening are one in a thousand” the patient will inevitably respond “Well, I will be that one in a thousand. Rare things always happen to me.” To some extent, this is an example of Abby Lippman’s key insight from 35 years ago that patients inevitably dichotomize odds – either it will happen to me or it won’t. It may also be a defense mechanism, a way for patients to prepare themselves for the possibility of an unlikely undesired outcome. Trying to reassure such patients with even more statistics is an exercise in futility; these situations require good basic counseling skills. Really, when it comes down to it, who cares what numbers they choose to believe? A better counseling approach is to acknowledge the patient’s viewpoint and then explore why they believe these numbers and how that perception affects their decision-making.
7) If you make a clerical error, no matter how tiny and seemingly insignificant, it will come back to haunt you in unforeseeable and kafkaesque ways, and it will be nearly impossible to undo the error. My father, a career clerk, used to tell me ad nauseam “The world would be a better place if there were more good clerks.” Dad, bless his clerical heart, was right.
8) The patients for whom you put in the most effort – or pre-appointment preparation – are the ones most likely to complain about you or to no-show for their appointments.
9) Nobody – not our billing departments or even health insurers themselves – understands insurance coverage for genetic counseling and genetic testing. Genetics itself is far simpler to understand than billing for genetics.
10) There will be at least one genetic counselor at your institution who is on maternity leave or planning a wedding.
* – The astute DNA Exchange reader may have noted a tendency on the author’s part to name things after himself – Resta’s Rules, The Resta Paradox, RestaEZ Gene Panels. Admittedly this is shameless ego stroking. But it is better than an eponymous syndrome. With all due respect and apologies to our genetic counseling colleague Ann Smith, my preference is for a medical cure or a clever theory to be associated with my surname.
And, once again, a special thanks to Emily Singh, daughter extraordinaire, for help with graphics.