Browsing Institutt for privatrett by Author "Mascalzoni, Deborah"

Now showing items 1-8 of 8

  • The challenges of the expanded availability of genomic information: an agenda-setting paper 
    Borry, Pascal; Bentzen, Heidi Beate; Ljøsne, Isabelle Budin; Cornel, Martina C.; Howard, Heidi Carmen; Feeney, Oliver; Jackson, Leigh; Mascalzoni, Deborah; Mendes, Álvaro; Peterlin, Borut; Riso, Brigida; Shabani, Mahsa; Skirton, Heather; Sterckx, Sigrid; Vears, Danya; Wjst, Matthias; Felzmann, Heike (Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2017)
    Rapid advances in microarray and sequencing technologies are making genotyping and genome sequencing more affordable and readily available. There is an expectation that genomic sequencing technologies improve personalized ...
  • 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 / Tidsskriftartikkel / PublishedVersion; 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 ...
  • Dynamic Consent: a potential solution to some of the challenges of modern biomedical research 
    Budin-Ljøsne, Isabelle; Teare, Harriet J A; Kaye, Jane; Beck, Stephan; Bentzen, Heidi B; Caenazzo, Luciana; Collett, Clive; D’Abramo, Flavio; Felzmann, Heike; Finlay, Teresa; Javaid, Muhammad K; Jones, Erica; Katić, Višnja; Simpson, Amy; Mascalzoni, Deborah (Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2017)
    Background Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible ...
  • Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe? 
    Ljøsne, Isabelle Budin; Mascalzoni, Deborah; Soini, Sirpa; Machado, Helena; Kaye, Jane; Bentzen, Heidi Beate; Rial-Sebbag, Emmanuelle; D'Abramo, Flavio; Witt, Michal; Schamps, Geneviève; Katić, Višnja; Krajnovic, Dusanca; Harris, Jennifer (Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2016)
    Background: There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general ...
  • Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies 
    Johansson, Jennifer Viberg; Shah, Nisha; Haraldsdóttir, Eik; Bentzen, Heidi Beate; Coy, Sarah; Kaye, Jane; Mascalzoni, Deborah; Veldwijk, Jorien (Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2021)
    Background Discrete Choice Experiment (DCE) is a well-established technique to elicit individual preferences, but it has rarely been used to elicit governance preferences for health data sharing. Objectives The aim ...
  • Governing health data across changing contexts: A focus group study of citizen’s views in England, Iceland, and Sweden 
    Shah, Nisha; Johansson, Jennifer Viberg; Haraldsdóttir, Eik; Bentzen, Heidi Beate; Coy, Sarah; Mascalzoni, Deborah; Jonsdottir, Gudbjörg Andrea; Kaye, Jane (Journal article / Tidsskriftartikkel / AcceptedVersion; Peer reviewed, 2021)
    Background The governance structures associated with health data are evolving in response to advances in digital technologies that enable new ways of capturing, using, and sharing different types of data. Increasingly, ...
  • Preferences of the Public for Sharing Health Data: Discrete Choice Experiment 
    Viberg Johansson, Jennifer; Bentzen, Heidi Beate; Shah, Nisha; Haraldsdóttir, Eik; Jonsdottir, Gudbjörg Andrea; Kaye, Jane; Mascalzoni, Deborah; Veldwijk, Jorien (Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2021)
    Background: Digital technological development in the last 20 years has led to significant growth in digital collection, use, and sharing of health data. To maintain public trust in the digital society and to enable acceptable ...
  • Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries 
    Biasiotto, Roberta; Viberg Johansson, Jennifer; Alemu, Melaku Birhanu; Romano, Virginia; Bentzen, Heidi Beate; Kaye, Jane; Ancillotti, Mirko; Blom, Johanna Maria Catharina; Chassang, Gauthier; Hallinan, Dara; Jónsdóttir, Guðbjörg Andrea; Monasterio Astobiza, Aníbal; Rial-Sebbag, Emmanuelle; Rodríguez-Arias, David; Shah, Nisha; Skovgaard, Lea; Staunton, Ciara; Tschigg, Katharina; Veldwijk, Jorien; Mascalzoni, Deborah (Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2023)
    Background With new technologies, health data can be collected in a variety of different clinical, research, and public health contexts, and then can be used for a range of new purposes. Establishing the public’s ...