For research involving human participants, consent is a foundational principle in both law and ethics that supports participant autonomy.  In the context of data processing, and the GDPR specifically, consent is only one of several legal bases for the processing of personal data, including special-category data such as genomic and health-related data. That is, the data subject’s consent may not be the lawful basis under which data processing occurs. Nevertheless, seeking consent may remain an ethical requirement, even if it is not necessary for the purposes of data processing under the GDPR.

The European Joint Programme on Rare Diseases (EJP RD) is a GA4GH Driver Project working towards the advancement and innovation of rare disease research, funding, diagnosis, treatments, and clinical trials. The Driver Project recently shared the story of a patient named Yakup, whose family had spent years searching for answers to a set of neurological symptoms that afflicted him since birth.