3D: Returning biobank data to participants: Closing the loop

This session jointly organised with EP PerMed aims at being a moment of discussion between stakeholders in the process of returning to people data coming from genetic/genomic studies. Some examples of successful strategies to address this topic are already in place in countries all over the world, even though alignment and exchange of experiences is lacking and very much needed to address the ethical, legal, societal, infrastructural aspects underlying it. Return of data to patients and citizens can become a good practice of research and a powerful tool for people engagement, increasing genetic literacy, willingness to share health data and public trust in science and healthcare systems.

Speakers included in this session:

• Minja Pehrsson - Advancing precision medicine through return of biobank results

• Nikolai Paul Pace - DwarnaBio – the Maltese population biobank and insights from the Genomes of Malta

• Peggy Manders - Biobank participants’ choices regarding unsolicited findings and feedback

• Irene Schlünder - Regulatory and legal challenges of returning data to patients

• Daniela Quaggia - Returning individual participant data in clinical trials “by design”: Setting a new standard for research & patients’ rights

This session will be chaired by Matteo Gentili and Dr. Prof. Johanna Blom.