Health and Global Policy Institute (HGPI) Intractable & Rare Diseases Project has submitted public comments on the “Basic Plan for Genomic Medicine Policies (Draft)” by Research and Development Policy Division, Medical Affairs Bureau, Ministry of Health, Labour and Welfare. Please note that the call for public comments has already closed.

This plan (draft) is based on the “Genome Medicine Promotion Act (Act on the Comprehensive and Planned Promotion of Policies to Ensure That Citizens Can Receive High-Quality and Appropriate Genome Medicine with Peace of Mind)”, enacted in 2023, and outlines the basic policy direction for genome medicine that the government should pursue over the next five years starting in the 2025 fiscal year.

The “Basic Plan for Genomic Medicine Policies (Draft)” is expected to significantly contribute to the creation of a society where people living with rare and intractable diseases can access better medical care with peace of mind, by providing a concrete roadmap to significantly improve the accuracy of treatment for each patient and offer new treatments to those without existing therapies. Furthermore, the principle of ‘patient-centered, patient-benefiting’ outlined in this plan is of utmost importance in achieving genome medicine that places patients and those affected at the center, and should be consistently emphasized throughout the plan.

Particularly in the field of rare and intractable diseases, where many conditions are genetic in nature, it is essential to consider the complex emotional and social contexts associated with genetics, as well as the importance of social and psychological support, when advancing genomic medicine in this area.

Furthermore, an environment in which patients and stakeholders can safely enjoy the benefits of genomic medicine is considered to contribute to the technological development of genomic medicine in the field of intractable and rare diseases, as well as the development of new testing technologies and pharmaceuticals.

Based on the above, HGPI submitted public comments that included the following points.

Key Points of the Public Comment

• Promotion of interdisciplinary collaboration across medical specialties centered on genetic counselling professionals and the employment of online platforms.
• Establishment of a PPI (Patient and Public Involvement) framework to strengthen the “patient-centric, patient-benefiting” approach.
• Advancement of genomic medicine in the field of rare and intractable diseases targeting newborns.
• Establishment of an environment where patients can receive genomic medicine with peace of mind.

For more details on this public comment, please check here.