New Recommendation on Biological Materials Could Hamper Muscular Dystrophy Research

Conclusions If Recommendation 12.1 is applied to children, it would unduly restrict rare disease research by preventing the use of children’s biomaterials in research involving adults, or on anyone without the same condition and thereby constrict children’s right to benefit from the solidaristic actions of others. It would make efforts to improve data and biomaterials sharing for rare diseases more complex, time consuming and less efficient. Platforms such as RD Connect and BBMRI-ERIC which were designed to contribute to the efficacy and excellent of European research by easing access to resources, could be rendered less efficient by the need to introduce logistical complexity to isolate samples from children and to examine whether requests for samples are made in accordance with the proposed Recommendation. This is a crucial factor as 75% of rare diseases affect children and 30% of rare disease patients die before they are 5 years old. Researchers and research organisations should be wary of a restrictive interpretation of Recommendation, lest this by default becomes soft policy. A clarification from the Council of Ministers as to whether the relevant paragraphs of the new Recommendation are meant to include biomaterials from children would be helpful and would recognise the potential ramifications of their decision for research on childhood conditions, and for the unprecedented progress in rare disease. Data Availability Statement All relevant data are within the art...
Source: PLOS Currents Muscular Dystrophy - Category: Neurology Authors: Source Type: research