Changing Policy and Practice
Prof Emma Baple is creating an online educational resource to improve understanding of genetic conditions.

Most genomic data comes from European individuals. Consequently, people from more diverse ethnic backgrounds are more likely to receive unclear genetic test results or be misdiagnosed. The Exeter-led Windows of Hope translational genomic research programme works closely with Amish communities and healthcare providers. It combines research, clinical and community expertise, to improve understanding of genetic conditions and reduce healthcare inequalities. This has been the paradigm for parallel Palestinian, Omani and Pakistani collaborative programmes. Previously, Prof Emma Baple Foundation-funded work helped researchers to share their experiences of studying underrepresented communities. In 2019, Prof Baple and her team launched a free, certificated online course, 'Genomic Medicine and Research: A Community Approach'. More than 2000 students have enrolled on the course, which includes audiovisual materials from Amish families, clinicians and teachers. The 2021 Medical Schools Council impact report featured the course and feedback includes: “One can only hope that the excellent work explained in this course are disseminated to a worldwide audience”. Alongside updating scientific content, her team will now develop new materials stemming from collaborative work with other underrepresented communities worldwide. Key stakeholder support will continue to ensure wide-reaching impact of the course, providing a long-lasting legacy stemming from MRC-funded research. |