What we do
About our project
This project is part of a larger consortium entitled ‘CureQ - Predict, Delay & Cure polyglutamine (Q) caused neurodegeneration’ on predicting, delaying and curing Huntington's disease, Spinocerebellar ataxia (SCA) type 1 and SCA type 3. These diseases are caused by the same type of DNA error that leads to the production of disease-causing polyglutamine proteins. The diseases can develop at a relatively young age and often lead quickly to severe disabilities.
Recently, promising studies have begun with experimental treatments to inhibit the production of the disease-causing proteins. But before these treatments can be safely and purposefully applied, a number of important questions need to be answered, such as: when is the optimal time to begin treatment; who will benefit from these therapies, and can we better predict the onset and progression of the disease for each individual patient; can we develop alternative therapeutic strategies to lower the damaging protein, preferably with administration that is less invasive; and how can we help gene carriers make personal decisions about life planning and treatment options?
The Department of Medical Ethics, Philosophy and History of Medicine (dr. Ineke Bolt, Max Rensink MA, MSc and prof. dr. Maartje Schermer) is participating in this project and leading the workpackage into the ethical and psychosocial aspects of predictive diagnostics for these diseases.
Our research focus
Ethics of predictive diagnostics
The empirical-ethical research focuses on the question of whether and how predictive (prognostic) information about the onset and course of disease can be responsibly offered in clinical practice. In addition, ethical questions surrounding the use of artificial intelligence and the predictive model (when is a predictive model sufficiently reliable to implement in research and clinical care, how can bias in the data be avoided, how transparent should the predictive model be to health care providers?) are being investigated. The research project also provides input for (ethics) education on new medical technology to medical students.
The overall objective of the project is to provide ethics and psychological guidance for researchers, healthcare professionals and policy makers dealing with new prognostic information involving carriers of neurodegenerative diseases and to formulate the conditions for implementation of prognostic information and personalized medicine in an ethically responsible way.
Empirical research with HD and SCA carriers and health care providers will be conducted in order to acquire insight into their preferences and views regarding prognostic information and the expected/perceived impact of prognostic information on carriers’ lives, life choices and well-being as perceived by carriers. These findings are needed for an ethical analysis of the conditions for an ethically responsible implementation of prognostic information and the issue of the right (not) know prognostic information.
Funds & Grants
NWO (Dutch Research Council)
Collaborations
Our team
Max Rensink, PhD
Maartje Schermer, promotor
Contact person for the project: Ineke Bolt (l.bolt@erasmusmc.nl).
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