Browsing NTNU Open by Author "Ursin, Lars Øystein"
Now showing items 1-11 of 11
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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) -
Das persönliche Genom: Abschied von Privatheit und Zustimmung in der Biobankforschung?
Ursin, Lars Øystein (Journal article; Peer reviewed, 2010)Die ersten Karten des menschlichen Genoms wurden im Jahr 2000 präsentiert. Heute, zehn Jahre später, scheint die Sequenzierung des Genoms jedes einzelnen Bürgers, die es ermöglichen würde, die Vorsorge und Behandlung von ... -
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 ... -
Duties and Rights of Biobank Participants: Principled Autonomy, Consent, Voluntariness and Privacy
Ursin, Lars Øystein (Chapter, 2009)In this chapter the notion of principled autonomy is presented, and the perspective enabled by this notion is applied in the field of biobanking. Some consequences of the perspective of principled autonomy on aspects of ... -
European Electronic Personal Health Records initiatives and vulnerable migrants: A need for greater ethical, legal and social safeguards
Feeney, Oliver; Werner-Felmayer, Gabriele; Siipi, Helena; Frischhut, Markus; Zullo, Silvia; Barteczko, Ursela; Ursin, Lars Øystein; Linn, Shai; Felzmann, Heike; Krajnovic, Dusanca; Saunders, John; Rakic, Vojin (Journal article, 2019)The effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoples’ health status. With developments in ICT data ... -
Privacy and Property in the Biobank Context
Ursin, Lars Øystein (Journal article; Peer reviewed, 2010)The papers in this special thematic issue of HEC Forum critically and carefully explore key issues at the intersection of patient privacy and commodification. For example, should hospitals be required to secure a person’s ... -
Protect us from ourselves: Balancing the parental instinct of saving
Ursin, Lars Øystein; Syltern, Janicke Marita (Peer reviewed; Journal article, 2019)Background: Neonatologists, legal experts and ethicists extensively discuss the ethical challenges of decision-making when a child is born at the limit of viability. The voices of parents are less heard in this discussion. ... -
The Informed Consenters: Biobank Research and the Ethics of Recruitment and Participation
Ursin, Lars Øystein (Doktoravhandlinger ved NTNU, 1503-8181; 2008:290, Doctoral thesis, 2008) -
We're not in it for the money - lay people's moral intuitions on commercial use of 'their' biobank
Steinsbekk, Kristin Solum; Ursin, Lars Øystein; Skolbekken, John-Arne; Solberg, Berge (Journal article; Peer reviewed, 2013)Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial ... -
When is normative recruitment legitimate?
Ursin, Lars Øystein; Solberg, Berge (Journal article; Peer reviewed, 2008)Rosamond Rhodes and John Harris have both recently argued that we all have a general moral duty to participate in medical research. However, neither Rhodes’ nor Harris’ arguments in support of this obligation stand up to ... -
Withholding Versus Withdrawing Treatment: Why Medical Guidelines Should Omit “Theoretical Equivalence”
Ursin, Lars Øystein (Peer reviewed; Journal article, 2019)