Recent advances in genetic science and technology have increased the possibility that the development and severity of diseases such as rheumatoid arthritis can be predicted before any symptoms occur. This provides exciting opportunities to develop strategies for disease prevention, and facilitates early diagnosis and effective treatment.
It is therefore likely that in future years, more and more people will have opportunities to access information about their genetic makeup, and the likelihood that they will develop diseases. This raises important ethical concerns and questions about the management and evaluation of genetic information, both for health care providers and patients.
Mind the Risk is an international collaboration of researchers in philosophy, psychology, medicine, health economics and bioethics which aims to provide answers to these questions, and to support the clinical application of genetic risk information. The project runs from 2014-2020, and is funded by the Swedish Foundation for Humanities and Social Sciences.
First degree relatives (children and siblings) of patients with rheumatoid arthritis are more likely to develop the disease than other members of the general public. Therefore they are likely candidates for initiatives to predict the development of this disease, and for preventive interventions. However, patients may have considerable anxieties about approaching their relatives about their risk of rheumatoid arthritis.
As partners in the Mind the Risk project, our aim is to understand the perspectives of both patients and their first degree relatives about risk of rheumatoid arthritis, risk communication, predictive testing, and preventive interventions. We shall employ a range of research methodologies, including qualitative interviews, large scale surveys, and preference elicitation experiments.
As we are interested in the perspectives of patients and their relatives, we welcome input from patient partners at all stages of this research, from the way it is designed to the way we communicate our findings to the public. To find out more, please contact Dr Marie Falahee.