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 was an international collaboration of researchers in philosophy, psychology, medicine, health economics and bioethics which aimed to provide answers to these questions, and to support the clinical application of genetic risk information. The project ran from 2014-2020, and was 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 was 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 employed a range of research methodologies, including qualitative interviews and large scale surveys.
Several members of R2P2 have been working with the researchers to develop a survey study to explore people’s opinion about tests that predict someone’s risk of developing rheumatoid arthritis in the future. The survey also looked at how likely people with rheumatoid arthritis are to pass on information to their relatives about their risk of developing rheumatoid arthritis. There were two versions of the survey, one for patients with rheumatoid arthritis and one for their relatives.
Our patient research partners have made a huge contribution to this particular study. For example, as a result of their input we:
- Changed the content and design of the survey, omitting difficult questions and spreading the questions out to make the survey easier to read. We also included space for respondents to write in their own words how they feel about the issues raised in the survey.
- Split the survey for patients into two halves, so respondents could take a break if they wanted to. We also included table of contents to inform respondents what kind of questions were included in the survey so that they could decide in advance whether they wanted to complete the survey.
- Approached patients during visits to clinic, rather than by mail, so that they had an opportunity to raise any concerns with a member of their healthcare team.
- Did not approach patients who had been recently diagnosed with rheumatoid arthritis and who were coming to terms with their own diagnosis and treatment.
Patient research partners further developed a lay summary of a grant application to Versus Arthritis to fund a PhD student.
Recruitment for the Mind the Risk surveys has now closed as we have reached our target recruitment for both surveys. The MTR project itself officially finished but analysis and writing of articles is of course ongoing. Also Imogen Wells, the PhD student funded by Versus Arthritis will continue working on the survey results and conduct additional studies. Watch this space for some key findings!
A huge thank you to those patient partners who continue to support Mind the Risk!