WP 7: Ethics requirements

WP lead:

Holm Graessner
Institute of Medical Genetics and Applied Genomics
and Centre for Rare Diseases, University of Tübingen, Tübingen, Germany

Contributing partners:

All Solve-RD partners

 

This work package sets out the “ethics requirements” that the project must comply with.

 

Withdrawal policy

What happens if a patient withdraws consent that his/her sequencing data and/or biosamples can be analysed by the project?

It has been decided (and confirmed by the projects Independent Ethics Advisory Board) to remove the patient's entry from PhenoTips, GPAP, the EGA, and the sandbox/RD3 and also ask the partners who have a copy of the dataset on their local clusters to delete it. The dataset will not be included in analyses of the next data freeze or in analyses which have not started yet but it cannot be excluded from ongoing analyses. Analyses that have been performed before removal do not have to be repeated.