Placebo and nocebo effects in genetic testing: an urgent call for responsible prediction

Dr Mayli Mertens1

1University Of Antwerp, Antwerp, Belgium

Biography:

Dr. Mertens investigates how sense-making, through human and artificial cognition, impacts the physical world. Reflexive predictions like self-fulfilling and self-defeating prophecies are central to her work. Her main scientific interest is in epistemology and global bioethics. She teaches on bias, critical thinking, and technological innovation and received the honorary award “Excellence in Teaching” from the Yale University Interdisciplinary Center for Bioethics. In 2022, she founded the Atlas Center for Bioethics in Andalusia, Spain. Atlas is a non-profit aiming to facilitate and encourage global collaboration on biomedical, environmental, and animal ethics, and committed to the inclusion of underrepresented scholarship.

Abstract:

Environmental factors are crucial to physical and mental health. As demonstrated in epigenetics, the study of gene-environment interaction, the environment impacts even the expression of DNA. Such influence can come from outside and inside the organism. Environmental factors that are typically overlooked are people’s knowledge production, mental states, and beliefs.

Scholars raised concerns that beliefs about genetic information affects genetic risk to match that information—a self-fulfilling prophecy not unlike the placebo and nocebo effects. They show that receiving one’s genetic risk profile can change physiology independent of actual genetic risk. I respond to the worry that genetic predictions are likely to be reflexive i.e., that they impact the eventual outcome.

Using my theoretical model of reflexive prediction, I analyse the conditions required for self-fulfilling and self-defeating reflexivity: credibility, employment, employment sensitivity, and reflexivity itself. Reflexive predictions make it unclear what might’ve happened counterfactually, if no prediction had been made, and self-fulfilling prophecies especially are hard to identify. I present conscious and subconscious mechanisms that may explain the direct impact of genetic predictions on physiology, making it easier to identify reflexive predictions.

The current trend to focus on risk, biomarkers, and early diagnostics produces 'knowledge' which is inevitably based on undetermined information, given that gene expression is not fixed. Asserting such genetic information as determined when the assertion itself has potential impact on genetic expression is especially alarming considering the popularity of direct-to-consumer genetic testing and precision medicine. I end with guidance on when and how to communicate genetic information.

 

 

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