Statistics from Altmetric.com
I am neither a philosopher, nor a psychoanalyst, nor am I a specialist on ethical issues. Frankly, I tend to find the flights of lyricism of today’s “philosophising scientists” rather grotesque. So I will do my very best to avoid such pitfalls and to avoid attempts to imitate the great thinkers.
Yet, I feel that we are witnesses to much incomprehension and a long series of misunderstandings regarding both the current advances in genetics and the expectations they elicit. In citing several examples of these misunderstandings, untruths and over-simplified shortcuts, I hope to demonstrate—and this will be my underlying theme—just how difficult it is for us to make ourselves clearly understood. How difficult it is to communicate on a one-to-one basis with patients, as well as with public opinion on the whole. How difficult it is to express our certainties and our doubts.
Albert Camus once wrote that: “To name things incorrectly is to add to the misfortune of the world.” This problem is common in second opinion genetic consultations, in cases where, during an initial consultation, a diagnosis was pronounced—and a prognosis given at the same time. A diagnosis is one thing, but a prognosis is something entirely different! Confusing the two is like mixing up the notions of causality and correlation. Our diagnostic errors are serious, to be sure, but our prognostic errors are even more so. Patients will ultimately forgive us for our diagnostic errors, but they won’t forgive us our prognostic errors—because their effects are like gunshot wounds, inflicted at point blank range and without warning. It is very difficult to recover from them. When they occur, it takes an infinite amount of time and energy to explain to the patient that gene mutation is one thing and that its consequences are quite another. An infinite …