WP6: Ethics

Main aim: Main aim: To formulate the conditions for a morally acceptable implementation of age of onset (AO) and progression of disease (POD) prediction for carriers of Huntington’s disease and SCA type 1 and 3 in research and clinical practice.

WP leader: Ineke Bolt (Erasmus MC)

AO and POD prediction may be valuable for personal purposes (e.g., planning ahead) and for research purposes (to enable interventional studies earlier in the disease course) and in clinical practice (to intervene early in disease process in case a disease modifying treatment becomes available). However, it also raises questions, e.g., do carriers want to know, what will be the impact on life decisions and well-being, and under what conditions is it morally acceptable to offer AO & POD prediction in research and clinical practice? The ethics WP will address these questions. In addition, the WP will study the use of Artificial Intelligence (AI) in order to predict AO and POD. What are the risks of AI-aided prediction, and how can we overcome them? Finally, what may be the societal consequences, e.g., the interests of insurers and employers in disclosure of AO and POD prediction versus the interests of carriers in access to supplemental health care insurance, disability and life insurance.

The ethics WP consists of an empirical and theoretical study. For the empirical study, we conduct qualitative interviews with gene mutation carriers and possibly with individuals at-risk for HD and SCA to learn their views on AO and POD prediction and the expected impact on their well-being and personal decision-making. We also conduct interviews with medical professionals to learn their views and organize meetings with the patient organizations of HD and SCA to discuss the interview questions and the results of the interviews respectively. The outcome of the empirical study is important input for the theoretical ethical reflection and will be integrated with ethical theories and principles in order to identify an ethically justified implementation of AO and POD prediction.

Dutch summary

De ethiek workpackage heeft als doel om de voorwaarden voor de invoering van een toekomstig voorspellend model in kaart te brengen: is het moreel verantwoord om predictief testen van de beginleeftijd en het beloop van de ziekte in onderzoek en kliniek aan te bieden? Dit doen we door interviews af te nemen met mutatiedragers van HD en SCA en met zorgprofessionals. Hiermee brengen we hun perspectieven en voorkeuren in kaart. Dit is belangrijke input voor de ethische analyse, waarbij we deze data integreren met belangrijke ethische theorieën en principes. Daarnaast onderzoeken wij de ethische aspecten van kunstmatige intelligentie in deze predictieve testen en de mogelijke maatschappelijke consequenties (bijvoorbeeld het afsluiten van levensverzekeringen).