Heidi Beate Bentzen

Academic interests
- Biotechnology Law
- Privacy and Data Protection Law
- Health Law
- Bioethics
- Life Science
- Personalized Medicine / Precision Medicine
- Artificial Intelligence
Bentzen’s PhD project pertains to the legal regulation of personalized medicine in the EU/EEA. This includes the regulation of genetic testing, and the processing of human biological samples and DNA data, including reuse and data sharing both within and outside the EU/EEA.
Bentzen also researches reuse of health data through the Nordic, interdisciplinary, empirical project Governance of health data in cyberspace.
Courses taught
- Data protection law at PhD level:
- HES9365 Register-based epidemiology
- CCBIO906 Cancer Genomics
Background
Bentzen holds an LLM/Master of Laws degree, and shares her time between The Centre for Medical Ethics at the Faculty of Medicine and The Norwegian Research Center for Computers and Law at the Faculty of Law, both at The University of Oslo. She collaborates with The Norwegian Cancer Genomics Consortium.
Bentzen is also an Academic Affiliate at HeLEX Centre for Health, Law and Emerging Technologies at the University of Oxford.
She is a member of the United Nations Special Rapporteur on the Right to Privacy's Task Force on privacy and the protection of health data (MediTAS), and was part of drafting the global Recommendation on the protection and use of health-related data.
Bentzen is a member of the Norwegian Directorate of Health's Bio Reference Group, which is an expert advisory board for the Norwegian authorities in biotechnology related matters.
She contributes to the drafting of a GDPR Code of Conduct for health research in the EU, an initiative spearheaded by the European biobank network BBMRI-ERIC. She is a Board Member of the Norwegian Association for Computers and Law, and Bioethics Advisor for the European Huntington's Disease Network. She is furthermore Bioethics Advisor for three Horizon 2020 financed research projects, and external Advisory Board Member for a fourth Horizon 2020 project.
Bentzen co-chaired the law and ethics working group in the European network for researchers working on ELSI aspects of genomics, COST Action IS1303. She is a member of COST Action CA17130 on implementation of psychiatric genetic counseling, testing, and training in Europe.
Bentzen is an ad hoc reviewer for several international scientific journals. She reviews research proposals for the Dam Foundation and for EU's research and innovation program Horizon 2020.
Publications
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Bentzen, Heidi Beate (2022). Context as key: The protection of personal integrity by means of the purpose limitation principle. In Kosta, Eleni; Leenes, Ronald & Kamara, Irene (Ed.), Research Handbook on EU Data Protection Law. Edward Elgar Publishing. ISSN 9781800371675. p. 380–403.
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Johansson, Jennifer Viberg; Bentzen, Heidi Beate & Mascalzoni, Deborah (2022). What ethical approaches are used by scientists when sharing health data? An interview study. BMC Medical Ethics. ISSN 1472-6939. 23. doi: 10.1186/s12910-022-00779-8.
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Hsieh, Tzung-Chien; Bar-Haim, Aviram; Moosa, Shahida; Ehmke, Nadja; Gripp, Karen W. & Pantel, Jean Tori [Show all 47 contributors for this article] (2022). GestaltMatcher facilitates rare disease matching using facial phenotype descriptors. Nature Genetics. ISSN 1061-4036. doi: 10.1038/s41588-021-01010-x.
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Shah, Nisha; Johansson, Jennifer Viberg; Haraldsdóttir, Eik; Bentzen, Heidi Beate; Coy, Sarah & Mascalzoni, Deborah [Show all 8 contributors for this article] (2021). Governing health data across changing contexts: A focus group study of citizen’s views in England, Iceland, and Sweden. International Journal of Medical Informatics. ISSN 1386-5056. doi: 10.1016/j.ijmedinf.2021.104623. Full text in Research Archive
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Viberg Johansson, Jennifer; Bentzen, Heidi Beate; Shah, Nisha; Haraldsdóttir, Eik; Jonsdottir, Gudbjörg Andrea & Kaye, Jane [Show all 8 contributors for this article] (2021). Preferences of the Public for Sharing Health Data: Discrete Choice Experiment. JMIR Medical Informatics. ISSN 2291-9694. 9(7). doi: 10.2196/29614. Full text in Research Archive
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Johansson, Jennifer Viberg; Shah, Nisha; Haraldsdóttir, Eik; Bentzen, Heidi Beate; Coy, Sarah & Kaye, Jane [Show all 8 contributors for this article] (2021). Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies. Technology in society. ISSN 0160-791X. 66(101625). doi: 10.1016/j.techsoc.2021.101625. Full text in Research Archive
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O'Doherty, Kieran C.; Shabani, Mahsa; Dove, Edward S.; Bentzen, Heidi Beate; Borry, Pascal & Burgess, Michael M. [Show all 24 contributors for this article] (2021). Toward better governance of human genomic data. Nature Genetics. ISSN 1061-4036. 53, p. 2–8. doi: 10.1038/s41588-020-00742-6. Full text in Research Archive
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Solbakk, Jan Helge; Bentzen, Heidi Beate; Holm, Søren; Heggestad, Anne Kari Tolo; Hofmann, Bjørn Morten & Robertsen, Annette [Show all 10 contributors for this article] (2020). Back to WHAT? The role of research ethics in pandemic times. Medicine, Health care and Philosophy. ISSN 1386-7423. p. 1–16. doi: 10.1007/s11019-020-09984-x. Full text in Research Archive
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Høstmælingen, Njål & Bentzen, Heidi Beate (2020). How to operationalise human rights for COVID-19 measures. BMJ Global Health. ISSN 2059-7908. doi: 10.1136/bmjgh-2020-003048. Full text in Research Archive
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Bentzen, Heidi Beate (2020). In the Name of Scientific Advancement: How to Assess what Constitutes 'Scientific Research' in the GDPR to Protect Data Subjects and Democracy. In Terzis, Georgios; Kloza, Dariusz; Kużelewska, Elżbieta & Trottier, Daniel (Ed.), Disinformation and Digital Media as a Challenge for Democracy. Intersentia. ISSN 9781780689753. p. 341–366. Full text in Research Archive
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Goisauf, Melanie; Martin, Gillian; Bentzen, Heidi Beate; Ljøsne, Isabelle Sylvie Budin; Ursin, Lars Øystein & Durnová, Anna [Show all 13 contributors for this article] (2019). Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research. PLOS ONE. ISSN 1932-6203. 14(9). doi: 10.1371/journal.pone.0221496. Full text in Research Archive
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Hsieh, Tzung-Chien; Mensah, Martin A.; Pantel, Jean T.; Aguilar, Dione; Bar, Omri & Bayat, Allan [Show all 94 contributors for this article] (2019). PEDIA: prioritization of exome data by image analysis. Genetics in Medicine. ISSN 1098-3600. 21(12), p. 2807–2814. doi: 10.1038/s41436-019-0566-2. Full text in Research Archive
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Nicol, Dianne; Eckstein, Lisa; Bentzen, Heidi Beate; Borry, Pascal; Burgess, Mike & Burke, Wylie [Show all 23 contributors for this article] (2019). Consent insufficient for data release. Science. ISSN 0036-8075. 364(6439), p. 445–446. doi: 10.1126/science.aax0892. Full text in Research Archive
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Mascalzoni, Deborah; Bentzen, Heidi Beate; Ljøsne, Isabelle Sylvie Budin; Bygrave, Lee Andrew; Bell, Jessica & Dove, Edward S. [Show all 21 contributors for this article] (2019). Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation? Annals of Internal Medicine. ISSN 0003-4819. 170(5), p. 332–334. doi: 10.7326/M18-2854. Full text in Research Archive
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Bentzen, Heidi Beate & Høstmælingen, Njål (2019). Balancing Protection and Free Movement of Personal Data: The New European Union General Data Protection Regulation. Annals of Internal Medicine. ISSN 0003-4819. 170(5), p. 335–337. doi: 10.7326/M18-2782.
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Borry, Pascal; Bentzen, Heidi Beate; Ljøsne, Isabelle Budin; Cornel, Martina C.; Howard, Heidi Carmen & Feeney, Oliver [Show all 17 contributors for this article] (2017). The challenges of the expanded availability of genomic information: an agenda-setting paper. Journal of Community Genetics. ISSN 1868-310X. doi: 10.1007/s12687-017-0331-7. Full text in Research Archive
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Bentzen, Heidi Beate & Svantesson, Dan Jerker B. (2017). Jurisdictional Challenges Related to DNA Data Processing in Transnational Clouds. In Svantesson, Dan Jerker B. & Kloza, Dariusz (Ed.), Trans-Atlantic Data Privacy Relations as a Challenge for Democracy. Intersentia. ISSN 9781780684345. p. 241–262. Full text in Research Archive
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Ljøsne, Isabelle Budin; Teare, Harriet J.A.; Kaye, Jane; Beck, Stephan; Bentzen, Heidi Beate & Caenazzo, Luciana [Show all 15 contributors for this article] (2017). Dynamic Consent: A potential solution to some of the challenges of modern biomedical research. BMC Medical Ethics. ISSN 1472-6939. 18:4, p. 1–10. doi: 10.1186/s12910-016-0162-9. Full text in Research Archive
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O'Doherty, Kieran C.; Christofides, Emily; Yen, Jeffery; Bentzen, Heidi Beate; Burke, Wylie & Hallowell, Nina [Show all 8 contributors for this article] (2016). If you build it, they will come: unintended future uses of organised health data collections. BMC Medical Ethics. ISSN 1472-6939. 17:54, p. 1–16. doi: 10.1186/s12910-016-0137-x. Full text in Research Archive
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Bentzen, Heidi Beate (2022). Sky i offentlig sektor.
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Bentzen, Heidi Beate (2022). Overføring av pseudonyme helseopplysninger for medisinsk forskning til land utenfor EØS – Rettslige utfordringer.
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Bentzen, Heidi Beate (2021). Panel debate on Balancing Fundamental Rights in Data Regulation.
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Ursin, Giske & Bentzen, Heidi Beate (2021). Open science and sharing personal data widely–legally impossible for Europeans? Acta Oncologica. ISSN 0284-186X. doi: 10.1080/0284186X.2021.1995894.
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Casati, Sara; Metzler, Ingrid; Mayrhofer, Michaela Th.; Moons, Pieter; Halouzka, Radek & Jahns, Roland [Show all 18 contributors for this article] (2021). A workable regulatory framework for multicentre and multinational biobank-based research: Where are we in 2021?
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Bentzen, Heidi Beate (2021). The Legal Framework for Return of Results.
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Bentzen, Heidi Beate (2021). Governance of Health Data in Cyberspace: Nordic Research Results.
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Ursin, Giske & Bentzen, Heidi Beate (2021). Rettslige utfordringer struper medisinsk forskning. Aftenposten (morgenutg. : trykt utg.). ISSN 0804-3116.
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Bentzen, Heidi Beate (2021). GDPR for dummies: A survival guide for genetics research.
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Bentzen, Heidi Beate (2021). Europe's Genomics Community Wrestling with Uncertainty Presented by Privacy Legislation. [Internet]. GenomeWeb.
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Bentzen, Heidi Beate (2021). How to transfer genomic data internationally in compliance with the GDPR.
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Bentzen, Heidi Beate; Castro, Rosa; Fears, Robin; Griffin, George; ter Meulen, Volker & Ursin, Giske (2021). Remove obstacles to sharing health data with researchers outside of the European Union. Nature Medicine. ISSN 1078-8956. 27, p. 1329–1333. doi: 10.1038/s41591-021-01460-0. Full text in Research Archive
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Bentzen, Heidi Beate (2021). Panelist: Digital sovereignty in a world of interdependencies.
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Bentzen, Heidi Beate (2021). Main findings from the project – Legal challenges.
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Bentzen, Heidi Beate (2021). Overføring av pseudonyme helseopplysninger for medisinsk forskning til land utenfor EØS – Rettslige utfordringer.
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Bentzen, Heidi Beate (2021). Europe's data protection rules are hampering international health research. [Internet]. Politico.
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Bentzen, Heidi Beate (2021). Forskere slår alarm: – Tusenvis av prosjekter er satt på vent og nye stanses. [Newspaper]. Dagens Medisin.
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Bentzen, Heidi Beate (2021). Europeiske forskere krever GDPR-løsninger. [Internet]. Kreftregisteret.
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Bentzen, Heidi Beate (2021). Legal Aspects of Health Data Processing in the Cloud after Schrems II.
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Bentzen, Heidi Beate (2020). Chat with Kristine Beitland: How governance mechanisms for health data can be designed to share, access, and prevent the risks associated with data collaboration and use.
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Bentzen, Heidi Beate (2020). Current activities at the Nordic and European level to enable personal data transfers for scientific research to non-EEA countries.
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Casati, Sara; Ellul, Bridget; Mezinska, Signe; Ljøsne, Isabelle Sylvie Budin; Martin, Gillian & Tzotzartou, Olga [Show all 10 contributors for this article] (2020). Mapping European RECs & ethics review processes for biobank-based research.
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Johansson, Jennifer Viberg; Shah, Nisha; Kaye, Jane; Haraldsdóttir, Eik; Jónsdóttir, Guðbjörg Andrea & Mascalzoni, Deborah [Show all 8 contributors for this article] (2020). Identifying the Public's Preferences for Sharing Health Data Digitally.
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Solbakk, Jan Helge; Bentzen, Heidi Beate; Holm, Søren; Heggestad, Anne Kari Tolo; Hofmann, Bjørn Morten & Robertsen, Annette [Show all 10 contributors for this article] (2020). Høyrisikostudier på alle mennesker i Covid-19-sammenheng er etisk uforsvarlig. Uniforum. ISSN 1891-5825.
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Bentzen, Heidi Beate (2020). GDPR for dummies: A survival guide for genetics research.
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Bentzen, Heidi Beate (2020). Legal aspects of data sharing.
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Bentzen, Heidi Beate (2020). Bias and discrimination, misuse, and ethics vs law as a way to regulate AI.
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Bentzen, Heidi Beate (2020). Genetisk selvtesting av barn.
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Bentzen, Heidi Beate (2020). A World View.
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Bentzen, Heidi Beate (2020). Transport, indkøbsvaner og mobiltelefoner: Sådan skal data hjælpe med at træffe beslutninger om coronakrisen. [Internet]. DR.
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Bentzen, Heidi Beate (2020). FHI-app skal lagre info om dine bevegelser i 30 dager. [Internet]. NRK .
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Bentzen, Heidi Beate (2020). Mapping a moral grey zone: Interview with Heidi Beate Bentzen. [Business/trade/industry journal]. EHDN News.
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Bentzen, Heidi Beate (2020). FHI lager app for å spore folk i kampen mot koronaviruset. [Internet]. NRK .
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Bentzen, Heidi Beate (2020). Moderator: Open Science with Health and Genetic Data: A Contradiction?
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Bentzen, Heidi Beate (2019). Europeisk GDPR atferdsnorm for helseforskning.
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Bentzen, Heidi Beate (2019). Recommendation on the protection and use of health-related data.
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Bentzen, Heidi Beate (2019). Paneldebattant: Dialogue on the value of health data.
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Bentzen, Heidi Beate (2019). Introduksjon til GDPR for helseforskning.
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Bentzen, Heidi Beate (2019). “I ain’t lookin’ to block you up”: International Collaboration and Data Flow Under the EU GDPR.
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Bentzen, Heidi Beate (2019). Balancing protection and free movement of personal data.
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Bentzen, Heidi Beate (2019). Ethical and social issues surrounding the balancing of individual vs. community interests in psychiatric genetics.
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Bentzen, Heidi Beate (2019). AI – Giving medicine an edge and pushing privacy to its edge.
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Bentzen, Heidi Beate (2019). Trenger vi etiske retningslinjer for kunstig intelligens?
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Bentzen, Heidi Beate (2019). Oversikt over pågående initiativer for behandling av helseopplysninger.
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Bentzen, Heidi Beate (2019). The Legal Regulation of Precision Medicine.
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Bentzen, Heidi Beate (2019). Utfordringer med økt tilgjengelighet av genomiske data. Bestpractice Onkologi/Hematologi. ISSN 2245-0440.
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Høstmælingen, Njål & Bentzen, Heidi Beate (2019). EUs personvernforordning har to ansikter. Tidsskrift for Den norske legeforening. ISSN 0029-2001. doi: 10.4045/tidsskr.19.0166.
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Bentzen, Heidi Beate (2019). Deling av data i forskning.
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Bentzen, Heidi Beate (2019). GDPR-forsker: – Det trengs nye tekniske løsninger. [Newspaper]. Dagens Medisin.
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Høstmælingen, Njål & Bentzen, Heidi Beate (2019). – GDPR har blitt et symbol på konflikt. [Newspaper]. Dagens Medisin.
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Bentzen, Heidi Beate (2019). Introduksjon til GDPR for helseforskning i praksis.
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Bentzen, Heidi Beate (2019). Kunstig intelligens og helse. En oversikt over juridiske hovedutfordringer.
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Bentzen, Heidi Beate (2018). Formålsbestemthet. Om prinsippet og implikasjonene av prinsippet.
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Bentzen, Heidi Beate (2018). Doing Right: Law and Precision Medicine.
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Bentzen, Heidi Beate (2018). Shedding Light on Legal Aspects of Genetic Data Processing in the Cloud.
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Bentzen, Heidi Beate (2018). Amid GDPR Implementation, European Effort Drafts Code of Conduct for Sharing Health Research Data. [Internet]. GenomeWeb.
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Bentzen, Heidi Beate (2018). Personvern og datadeling i medisinsk og helsefaglig forskning.
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Bentzen, Heidi Beate (2018). Session chair: Brave New World: Learning Health Systems.
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Bentzen, Heidi Beate (2018). Doing Right: Law and Precision Medicine.
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Bentzen, Heidi Beate (2018). Panelsamtale: Fra forskning og kunnskap til handling!
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Bentzen, Heidi Beate (2017). Helsedata: Forskning vs personvern. [Radio]. NRK P1 Her og nå.
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Bentzen, Heidi Beate (2017). Helsedata – store verdier eller medisinsk overvåkingssamfunn på fremmarsj?
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Bentzen, Heidi Beate (2017). Panel Debate: Trans-Atlantic data privacy relations and the new data protection law in the European Union.
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Bentzen, Heidi Beate (2017). European Union's Regulation of Genetic Data.
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Bentzen, Heidi Beate (2017). Genomics and the new EU data protection rules in a Nordic context.
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Bentzen, Heidi Beate (2017). Medisinsk forskning i genomikkens tidsalder.
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Bentzen, Heidi Beate (2017). Legal Aspects of DNA Data Processing in International Databases.
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Aamdal, Steinar; Bentzen, Heidi Beate; Borge, Ole Johan; Erikstein, Bjørn K; Grimsgaard, Sameline & Hovig, Johannes Eivind [Show all 8 contributors for this article] (2017). Åpne Nordens grenser for forskning og behandling. Aftenposten (morgenutg. : trykt utg.). ISSN 0804-3116.
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Bentzen, Heidi Beate (2016). How well protected are samples and data from unintended uses?
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O'Doherty, Kieran C.; Christofides, Emily; Yen, Jeffery; Bentzen, Heidi Beate; Burke, Wylie & Hallowell, Nina [Show all 8 contributors for this article] (2016). If you build it, they will come: Unintended future uses of organised health data collections. Complex. ISSN 0806-1912. p. 31–67.
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Bentzen, Heidi Beate (2016). Anonymization of Health Data.
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Bentzen, Heidi Beate (2016). Genomics and the new EU Data Protection rules in a Nordic context.
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Bentzen, Heidi Beate (2016). DNA-datadeling – Hvor setter vi grensen?
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Bentzen, Heidi Beate (2016). Goymsla av genomdata.
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Bentzen, Heidi Beate (2016). Human Biological Samples versus Personal Data.
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Bentzen, Heidi Beate (2016). Discussion panel on regional and professional developments and challenges in genomics.
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Bentzen, Heidi Beate (2016). Rethinking Jurisdiction in Transnational Genomic Clouds.
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Bentzen, Heidi Beate (2016). Genomic Research Review in Norway – REC’s Role.
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Griffin, George; ter Meulen, Volker; Albert, Adelin; Bentzen, Heidi Beate; Boiten, Jan-Willem & Danesh, John [Show all 22 contributors for this article] (2021). International Sharing of Personal Health Data for Research. The ALLEA, EASAC and FEAM joint initiative on resolving the barriers of transferring public sector data outside the EU/EEA. ALLEA, EASAC and FEAM. ISSN 978-3-8047-4249-9.