Mind the Risk
Modern technology rasies questions and concerns when it comes to evaluating and dealing with genetic risk information, both as professional health care givers and as patients.
Details
- Period: 2014-01-01 – 2019-12-31
- Budget: 35,899,998 SEK
- Funder: Riksbankens jubileumsfond
- Type of funding: Projektbidrag
Managing genetic risk information
Biomedical research is constantly finding new ways to detect genetic variation and link the findings to diseases and to the effects of various drug treatments. The amount of information that it produces keeps increasing, but we are still not sure how to manage it.
There are pressing ethical concerns and a need to improve clinical practice. Mind the Risk is an international, multi-disciplinary research project that runs over six years. Together, we provided a philosophical and conceptual framework that, together with historical and socio-cultural analyses of concerns about risk information, empirical investigations of risk perceptions and preferences and ethical analyses, can guide the regulation and management of genetic and related risk information in various settings.
The project worked to...
- Develop a conceptual framework for genetic risk information and management.
- Assess perceptions and evaluations of genetic risks in different stakeholder groups
- Assess the ethical, psychological and social implications of the provision of risk information from genetic and related technologies.
- Explore new forms of communication and information, and develop tools to improve communication skills regarding genetic risk information
From research to opera
Mind the Risk inspired an opera. The Galloping Cure is premiering in the autum of 2026. Based on the project's research, the opera explores how medical risks linked to genetics, pharmaceuticals, and new technologies are understood and managed. By connecting to the opioid crisis through opera, it is an example of how academic work can shape public debate and cultural dialogue beyond academia.
Through this endeavour, rather than remaining confined to academic or policy contexts, Mind the Risk research has made its way into the performance arts.
Researchers were involved alongside artists during development, allowing empirical and ethical perspectives on medical risk to be reflected in the final work. An uncommon model for sharing research insights with broader audiences and in non‑traditional channels.
Medical ethics research inspires opera on the international stage
An international research project in medical ethics, coordinated from Uppsala University, ...
Collaborators
Mind the Risk is a six year international network collaboration with scientists and researchers from Uppsala, Birmingham, Göttingen, Manchester, Milano and Stockholm funded by Riksbankens Jubileumsfond (The Swedish Foundation for Humanities and Social Sciences).
The project was coordinated from Uppsala University's Centre for Research Ethics & Bioethics.
"The book" on genetic risk information (in Swedish)
The Mind The Risk final report is half report, half reflection. Written by Pär Segerdahl and Anna Holm Bodin, part II highlights the ethical challenges that arise when more and more people encounter genetic information about future risks for their health. Encouraging further reflection on genetic risk information.
