Promoting ethical standards for primary and secondary uses of data and samples
The growing complexity in the use of data highlights gaps in the Ethical Review model currently used throughout. The ethical review for projects using human data and samples is applied unevenly across borders and even across institutions. While some Review Ethical Committees apply strict constrains for primary and secondary uses of data and samples, such as requirement for strict and specific consent, others do not apply the same rules. In certain instances, data and samples are used for secondary studies without any ethical review at all.
In light of the new EU General Data Protection Regulation, research community needs to agree on standards and minimal requirements in ethical review. Therefore, on the 20th Feb 2018 in Paris, Uppsala University, BBMRI-ERIC, EURORDIS-Rare Diseases Europe, and RD-Connect are organizing a consensus conference that will bringing together various stakeholders and experts to collect good practices and provide input to the Rare Diseases Research Community.