The characters in Franz Kafka’s novels go astray in the corridors of bureaucracy. Impersonal officials handle never-defined cases as if they were robots controlled by algorithms as obscure as they are relentless. Judgments are passed without the convicted receiving any comprehensible information about possible charges.
Please excuse this dramatic introduction, which, in a perhaps slightly extreme way, is only intended to highlight a point in an article about precision medicine. Namely, the importance of placing the methods of precision medicine within the framework of the meeting between patient and physician: the importance of “personalizing” precision medicine.
Precision medicine is the name for methods to optimize disease management on the basis of the patient’s individual genetic profile. A bit like in a dating app that is meant to identify the best potential partner for you. Algorithms are used to calculate how patients with different genetic variants are likely to respond to drug treatments for some disease. There are advantages to this. The most effective and safe treatment for the patient in question can be identified. It also means that you can avoid treatments from which a patient with a certain genetic profile has very serious side effects. Or from which the patient is unlikely to get any positive effect, but would only suffer the side effects.
Together with several co-authors, Åsa Grauman at CRB recently published an interview study on precision medicine. Patients with a form of blood cancer (AML) in Finland, Italy and Germany were interviewed about how they viewed precision medicine, and about their preferences for being involved in this new way of making treatment decisions. Something I found interesting was that several (not all) participants wanted and valued information, but not for the purpose of making decisions. They wanted information to prepare themselves mentally, to know what to expect and to understand why different measures were being taken. They wanted information to be able to make the transition to being patients, I would like to say.
Almost all participants were unfamiliar with precision medicine. When the interviewer described the concept to them, most of them felt that precision medicine made sense and they were hopeful that the methods could be useful in the future. For example, to avoid unnecessary treatments with severe side effects in patients with a certain genetic profile. But even if the participants had faith in the algorithms that may be used in precision medicine, they emphasized that the algorithms are only a tool for the physician. They said that the physician can see the human side of the patient and the disease, and that the physician should be able to go against the algorithm depending on factors in the patient other than those included in the algorithm. The algorithm must not replace the physician or run over the patient. Many participants thus seemed to hold the view that difficult treatment decisions can be left to the physician, if the physician has listened to both the algorithm and the patient. Participants also highlighted the problem of not fitting into the algorithm: being denied treatment because the algorithm does not consider one to be the right patient for the available treatment options.
In their discussion, the authors highlighted a particularly interesting aspect of the situation of making treatment decisions. Namely, that the patient can weigh benefits and risks differently than both the physician and the algorithm. Incorporating the patient’s own trade-offs is therefore fundamental, they write, for precision medicine to be considered personalized care. Read the thought-provoking interview study here: Personalizing precision medicine: Patients with AML perceptions about treatment decisions.
To summarize, one could say that patients need to meet not only their algorithmically optimized treatment. In order to understand and influence their situation as patients, they above all need to meet their physician. Even if the patients feel that the decisions are too difficult and are positive to the possibilities of precision medicine, they want to talk to the physician and they want their meeting to influence the decisions. Perhaps treatment in an important sense begins even before the treatment decision is made, when the patient first meets the physician and they begin to find their way together through the hospital corridors. Corresponding meaningful encounters were never experienced by the characters in Kafka’s novels.
Written by…
Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.
Åsa Grauman, Mika Kontro, Karl Haller, et al. Personalizing precision medicine: Patients with AML perceptions about treatment decisions. Patient Education and Counseling 115, 2023, https://doi.org/10.1016/j.pec.2023.107883
In dialogue with patients
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