• Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation? 

      Mascalzoni, Deborah; Bentzen, Heidi Beate; Ljøsne, Isabelle Sylvie Budin; Bygrave, Lee Andrew; Bell, Jessica; Dove, Edward S.; Fuchsberger, Christian; Hveem, Kristian; Mayrhofer, Michaela Th.; Meraviglia, Viviana; O'Brien, David R.; Pattaro, Cristian; Pramstaller, Peter P.; Rakic, Vojin; Rossini, Alessandra; Shabani, Mahsa; Svantesson, Dan Jerker B.; Tomasi, Marta; Ursin, Lars Øystein; Wjst, Matthias; Kaye, Jane (Journal article, 2019)
    • Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research 

      Goisauf, Melanie; Martin, Gillian; Bentzen, Heidi Beate; Ljøsne, Isabelle Sylvie Budin; Ursin, Lars Øystein; Durnová, Anna; Leitsalu, Liis; Smith, Katharine; Casati, Sara; Lavitrano, Marialuisa; Mascalzoni, Deborah; Boeckhout, Martin; Mayrhofer, Michaela Th. (Journal article; Peer reviewed, 2019)
      Biobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective of the professionals working in management or scientific roles ...
    • A practical checklist for return of results from genomic research in the European contex 

      Vears, Danya F.; Hallowell, Nina; Bentzen, Heidi Beate; Ellul, Bridget; Nøst, Therese Haugdahl; Kerasidou, Angeliki; Kerr, Shona M.; Mayrhofer, Michaela Th.; Mežinska, Signe; Ormondroyd, Elizabeth; Solberg, Berge; Sand, Birgitte Wirum; Ljøsne, Isabelle Sylvie Budin (Peer reviewed; Journal article, 2023)
      An increasing number of European research projects return, or plan to return, individual genomic research results (IRR) to participants. While data access is a data subject’s right under the General Data Protection Regulation ...