I am a bioethicist at the Department of Medical Ethics, Philosophy & History of Medicine at Erasmus Medical Center in Rotterdam, the Netherlands. After a study in theology (with a Master in bioethics and health care law) I started as a PhD on research into the ethics of presymptomatic genetic testing for late onset disease (in particular Huntington’s disease) at the Vrije Universiteit in Amsterdam. Presymptomatic testing, offered at Clinical Genetics at Leiden University Medical Center in 1987, confronted clinical geneticists and carriers with ethical issues (e.g., conflicts between the right to know and the right not to know of blood relatives). My PhD research left a deep impression on me, foremost because of the contacts with carriers and patients. I therefore feel grateful to be part of the CureQ consortium and to collaborate with the patient organizations of HD and SCA, and scientists of different disciplines.
After my PhD studies, I was involved in several European and national bioethical projects (from the beginning of life (reproductive technologies), enhancement technology, to end of life issues) and was a member of several ethics committees (e.g., the National Indication Committee on Preimplantation Genetic Testing). One of my current research interests is the ethics of new biomedical technologies. Besides research projects, I am a coordinator of ethics courses and involved in teaching ethics to medical students and clinical technology students (TU Delft) and general practitioners in training.
Within the CureQ consortium I am one of the co-applicants and the leader of the Ethics workpackage (WP6). I am the daily supervisor of Max Rensink who is working on the ethics workpackage as a PhD student. The aim of the workpackage is to explore the ethical, psychological and societal issues surrounding the development of new biomarkers for a more accurate prediction of age of onset (AO) and progression of disease (POD) in HD and SCA, and to formulate the conditions for a morally responsible implementation of AO and POD prediction.