Ethics and Society in Personalised Medicine

Personalised Medicine (PM) poses new ethical and societal challenges to individual autonomy, privacy, and personal responsibility for the common good. This means that PM cannot truly deliver on its promise until such ethical issues get addressed in a manner worthy of public confidence and trust.

We present an ethical framework to guide researchers and practitioners as they advance the goals of personalised medicine. Through a combination of empirical methods and normative analysis, we develop concrete recommendations to guide urgent policy decisions in this area.

Some of the project's activities are:

Part 1: Understanding the determinants for trust in digital health technologies
Who are the stakeholders when it comes to trust, and as what matters to them? What features or characteristics do these technologies need to have to engender trust?

Part 2: A large scale survey project to study public attitudes, expectations and concerns towards personalised health research that involves biobanking
What concerns do people have with regard to donating their health data and biological samples? With whom would they share their data? What motivates people to share, and what benefit do they find in participating in personalised health research?

Project Link:
external pagehttp://p3.snf.ch

Project Partner:
external pageSNF

Project Team:
Caroline Brall
external pageAfua van Haasteren
Effy Vayena

Brall, C., Berlin, C., Zwahlen, M., Ormond, K. E., Egger, M., & Vayena, E. (2021). Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey. PloS one, 16(4), e0249141. external pagehttps://doi.org/10.1371/journal.pone.0249141

van Haasteren, A., Gille, F., Fadda, M., & Vayena, E. (2019). Development of the mHealth App Trustworthiness checklist. Digital Health. external pagehttps://doi.org/10.1177/2055207619886463

Adjekum, A., Blasimme, A., & Vayena, E. (2018) Elements of Trust in Digital Health Systems: Scoping Review. Journal of Medical Internet Research, 20(12) external pagehttps://doi.org/10.2196/11254