Browsing Institutt for helse og samfunn by Author "Kaye, Jane"

Now showing items 1-6 of 6

  • Consent insufficient for data release 
    Nicol, Dianne; Eckstein, Lisa; Bentzen, Heidi Beate; Borry, Pascal; Burgess, Mike; Burke, Wylie; Chalmers, Don; Cho, Mildred; Dove, Edward S.; Fullerton, Stephanie; Ida, Ryuichi; Kato, Kazuto; Kaye, Jane; Koenig, Barbara; Manson, Spero; McGrail, Kimberlyn; Meslin, Eric M.; O'Doherty, Kieran; Prainsack, Barbara; Shabani, Mahsa; Tabor, Holly; Thorogood, Adrian; de Vries, Jantina (Journal article / Tidsskriftartikkel / AcceptedVersion; Peer reviewed, 2019)
  • 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 ...
  • eRegistries: Electronic registries for maternal and child health 
    Frøen, Frederik; Myhre, Sonja; Frost, Michael James; Chou, Doris; Mehl, Garrett; Say, Lale; Cheng, Socheat; Fjeldheim, Ingvild; Friberg, Ingrid; French, Steve; Jani-Bølstad, Jagrati; Kaye, Jane; Lewis, John; Lunde, Ane Kathrine; Mørkrid, Kjersti; Nankabirwa, Victoria; Nyanchoka, Linda; Stone, Hollie; Venkateswaran, Mahima; Wojcieszek, Aleena M; Temmerman, Marleen; Flenady, Vicki J (Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2016)
    Background The Global Roadmap for Health Measurement and Accountability sees integrated systems for health information as key to obtaining seamless, sustainable, and secure information exchanges at all levels of health ...
  • 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 ...
  • 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 ...
  • Toward better governance of human genomic data 
    O'Doherty, Kieran C.; Shabani, Mahsa; Dove, Edward S.; Bentzen, Heidi Beate; Borry, Pascal; Burgess, Michael M.; Chalmers, Don; de Vries, Jantina; Eckstein, Lisa; Fullerton, Stephanie; Juengst, Eric; Kato, Kazuto; Kaye, Jane; Knoppers, Bartha Maria; Koenig, Barbara; Manson, Spero; McGrail, Kimberlyn; McGuire, Amy L.; Meslin, Eric M.; Nicol, Dianne; Prainsack, Barbara; Terry, Sharon F.; Thorogood, Adrian; Burke, Wylie (Journal article / Tidsskriftartikkel / AcceptedVersion; Peer reviewed, 2021)
    Here, we argue that, in line with the dramatic increase in the collection, storage and curation of human genomic data for biomedical research, genomic data repositories and consortia have adopted governance frameworks to ...