Heidi Beate Bentzen

Doctoral Research Fellow - Centre for Medical Ethics
Image of Heidi Beate Bentzen
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Email h.b.bentzen@medisin.uio.no
Phone +47 22850086
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Visiting address Kirkeveien 166 Fredrik Holsts hus 0450 OSLO
Postal address Postboks 1130 Blindern 0318 OSLO
Other affiliations Faculty of Medicine (Student)

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, led by the University of Oxford, with the University of Oslo, Uppsala University and the University of Iceland as partners. 

Courses taught

  • Data protection law, both at Bachelor's and PhD level

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.

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. 

Publications

  • 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), s 335- 337 . doi: 10.7326/M18-2782
  • 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. (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.
  • Hsieh, Tzung-Chien; Mensah, Martin A.; Pantel, Jean T.; Aguilar, Dione; Bar, Omri; Bayat, Allan; Becerra-Solano, Luis; Bentzen, Heidi Beate; Biskup, Saskia; Borisov, Oleg; Braaten, Øivind; Ciaccio, Claudia; Coutelier, Marie; Cremer, Kirsten; Danyel, Magdalena; Daschkey, Svenja; David Eden, Hilda; Devriendt, Koenraad; Wilson, Sandra; Douzgou, Sofia; Dukic, Dejan; Ehmke, Nadja; Fauth, Christine; Fischer-Zirnsak, Björn; Fleischer, Nicole; Gabriel, Heinz; Graul-Neumann, Luitgard; Gripp, Karen W.; Gurovich, Yaron; Gusina, Asya; Haddad, Nechama; Hajjir, Nurulhuda; Hanani, Yair; Hertzberg, Jakob; Hoertnagel, Konstanze; Howell, Janelle; Ivanovski, Ivan; Kaindl, Angela; Kamphans, Tom; Kamphausen, Susanne; Karimov, Catherine; Kathom, Hadil; Keryan, Anna; Knaus, Alexej; Köhler, Sebastian; Kornak, Uwe; Lavrov, Alexander; Leitheiser, Maximilian; Lyon, Gholson J.; Mangold, Elisabeth; Marín Reina, Purificación; Martinez Carrascal, Antonio; Mitter, Diana; Morlan Herrador, Laura; Nadav, Guy; Nöthen, Markus; Orrico, Alfredo; Ott, Claus-Eric; Park, Kristen; Peterlin, Borut; Pölsler, Laura; Raas-Rothschild, Annick; Randolph, Linda; Revencu, Nicole; Ringmann Fagerberg, Christina; Robinson, Peter Nick; Rosnev, Stanislav; Rudnik, Sabine; Rudolf, Gorazd; Schatz, Ulrich; Schossig, Anna; Schubach, Max; Shanoon, Or; Sheridan, Eamonn; Smirin-Yosef, Pola; Spielmann, Malte; Suk, Eun-Kuyng; Sznajer, Yves; Thiel, Christian T.; Thiel, Gundula; Verloes, Alain; Vrecar, Irena; Wahl, Dagmar; Weber, Ingrid; Winter, Korina; Wisniewska, Marzena; Wollnik, Bernd; Yeung, Ming W.; Zhao, Max; Zhu, Na; Zschocke, Johannes; Mundlos, Stefan; Horn, Denise & Krawitz, Peter M. (2019). PEDIA: prioritization of exome data by image analysis. Genetics in Medicine.  ISSN 1098-3600. . doi: 10.1038/s41436-019-0566-2
  • 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 (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), s 332- 334 . doi: 10.7326/M18-2854
  • 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 (2019). Consent insufficient for data release. Science.  ISSN 0036-8075.  364(6439), s 445- 446 . doi: 10.1126/science.aax0892
  • Bentzen, Heidi Beate & Svantesson, Dan Jerker B. (2017). Jurisdictional Challenges Related to DNA Data Processing in Transnational Clouds, In Dan Jerker B. Svantesson & Dariusz Kloza (ed.),  Trans-Atlantic Data Privacy Relations as a Challenge for Democracy.  Intersentia.  ISBN 9781780684345.  11.  s 241 - 262 Full text in Research Archive.
  • 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 (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.
  • Ljøsne, Isabelle Budin; Teare, Harriet J.A.; Kaye, Jane; Beck, Stephan; Bentzen, Heidi Beate; Caenazzo, Luciana; Collett, Clive; D'Abramo, Flavio; Felzmann, Heike; Finlay, Teresa; Javaid, Muhammad Kassim; Jones, Erica; Katić, Višnja; Simpson, Amy & Mascalzoni, Deborah (2017). Dynamic Consent: A potential solution to some of the challenges of modern biomedical research. BMC Medical Ethics.  ISSN 1472-6939.  18:4, s 1- 10 . doi: 10.1186/s12910-016-0162-9 Full text in Research Archive.
  • 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 (2016). Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?. Biopreservation and Biobanking.  ISSN 1947-5535.  14(3), s 241- 248 . doi: 10.1089/bio.2015.0115 Full text in Research Archive.
  • O'Doherty, Kieran C.; Christofides, Emily; Yen, Jeffery; Bentzen, Heidi Beate; Burke, Wylie; Hallowell, Nina; Koenig, Barbara & Willison, Donald (2016). If you build it, they will come: unintended future uses of organised health data collections. BMC Medical Ethics.  ISSN 1472-6939.  17:54, s 1- 16 . doi: 10.1186/s12910-016-0137-x Full text in Research Archive.
  • Bentzen, Heidi Beate (2015). Om persontilpasset kreftmedisin basert på DNA-opplysninger – En bioteknologirettslig forskningssatsing. Lov & Data.  ISSN 0800-7853.  (123), s 18- 20
  • Bentzen, Heidi Beate (2013). Biologisk materiale som personopplysning. Lov & Data.  ISSN 0800-7853.  (115), s 12- 16

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Published Oct. 12, 2015 9:58 AM - Last modified Nov. 30, 2019 12:23 AM

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