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
- 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 (2021). Toward better governance of human genomic data. Nature Genetics. ISSN 1061-4036. 53, s 2- 8 . doi: 10.1038/s41588-020-00742-6
- 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 Georgios Terzis; Dariusz Kloza; Elżbieta Kużelewska & Daniel Trottier (ed.), Disinformation and Digital Media as a Challenge for Democracy. Intersentia. ISBN 9781780689753. 18. s 341 - 366 Full text in Research Archive.
- Høstmælingen, Njål & Bentzen, Heidi Beate (2020). How to operationalise human rights for COVID-19 measures. BMJ Global Health. ISSN 2059-7908. . doi: http://dx.doi.org/10.1136/bmjgh-2020-003048 Full text in Research Archive.
- Solbakk, Jan Helge; Bentzen, Heidi Beate; Holm, Søren; Heggestad, Anne Kari Tolo; Hofmann, Bjørn Morten; Robertsen, Annette; Alnæs, Anne Hambro; Cox, Shereen; Pedersen, Reidar & Bernabe, Rosemarie de la Cruz (2020). Back to WHAT? The role of research ethics in pandemic times. Medicine, Health care and Philosophy. ISSN 1386-7423. s 1- 16 . doi: 10.1007/s11019-020-09984-x Full text in Research Archive. Show summary
- 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. 21(12), s 2807- 2814 . doi: 10.1038/s41436-019-0566-2 Full text in Research Archive.
- 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 Full text in Research Archive.
- 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 Full text in Research Archive.
- 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 (2021). Legal Aspects of Health Data Processing in the Cloud after Schrems II.
- Bentzen, Heidi Beate (2020). A World View.
- Bentzen, Heidi Beate (2020). Bias and discrimination, misuse, and ethics vs law as a way to regulate AI.
- 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.
- Bentzen, Heidi Beate (2020). Current activities at the Nordic and European level to enable personal data transfers for scientific research to non-EEA countries.
- Bentzen, Heidi Beate (2020, 24. mars). FHI lager app for å spore folk i kampen mot koronaviruset. [Internett]. NRK.
- Bentzen, Heidi Beate (2020, 27. mars). FHI-app skal lagre info om dine bevegelser i 30 dager. [Internett]. NRK.
- Bentzen, Heidi Beate (2020). GDPR for dummies: A survival guide for genetics research.
- Bentzen, Heidi Beate (2020). Genetisk selvtesting av barn.
- Bentzen, Heidi Beate (2020). Legal aspects of data sharing.
- Bentzen, Heidi Beate (2020, 02. mars). Mapping a moral grey zone: Interview with Heidi Beate Bentzen. [Fagblad]. EHDN News.
- Bentzen, Heidi Beate (2020). Moderator: Open Science with Health and Genetic Data: A Contradiction?.
- Bentzen, Heidi Beate (2020, 18. mars). Overvåker og deler informasjon om koronasmittede. [Internett]. NRK.
- Bentzen, Heidi Beate (2020, 28. mars). Transport, indkøbsvaner og mobiltelefoner: Sådan skal data hjælpe med at træffe beslutninger om coronakrisen. [Internett]. DR.
- Casati, Sara; Ellul, Bridget; Mezinska, Signe; Ljøsne, Isabelle Sylvie Budin; Martin, Gillian; Tzotzartou, Olga; Bentzen, Heidi Beate; Jahns, Roland; Halouzka, Radek & Mayrhofer, Michaela Th. (2020). Mapping European RECs & ethics review processes for biobank-based research.
- Johansson, Jennifer Viberg; Shah, Nisha; Kaye, Jane; Haraldsdóttir, Eik; Jónsdóttir, Guðbjörg Andrea; Mascalzoni, Deborah; Bentzen, Heidi Beate & Veldwijk, Jorien (2020). Identifying the Public's Preferences for Sharing Health Data Digitally.
- Solbakk, Jan Helge; Bentzen, Heidi Beate; Holm, Søren; Heggestad, Anne Kari Tolo; Hofmann, Bjørn Morten; Robertsen, Annette; Alnæs, Anne Hambro; Cox, Shereen; Pedersen, Reidar & Bernabe, Rosemarie de la Cruz (2020). Høyrisikostudier på alle mennesker i Covid-19-sammenheng er etisk uforsvarlig. Uniforum. ISSN 1891-5825.
- Bentzen, Heidi Beate (2019). AI – Giving medicine an edge and pushing privacy to its edge.
- Bentzen, Heidi Beate (2019). Balancing protection and free movement of personal data.
- Bentzen, Heidi Beate (2019). Deling av data i forskning.
- Bentzen, Heidi Beate (2019). Ethical and social issues surrounding the balancing of individual vs. community interests in psychiatric genetics.
- Bentzen, Heidi Beate (2019). Europeisk GDPR atferdsnorm for helseforskning.
- Bentzen, Heidi Beate (2019, 15. mars). GDPR-forsker: – Det trengs nye tekniske løsninger. Dagens Medisin.
- Bentzen, Heidi Beate (2019). “I ain’t lookin’ to block you up”: International Collaboration and Data Flow Under the EU GDPR.
- Bentzen, Heidi Beate (2019). Introduksjon til GDPR for helseforskning.
- Bentzen, Heidi Beate (2019). Introduksjon til GDPR for helseforskning i praksis.
- Bentzen, Heidi Beate (2019). Kunstig intelligens og helse. En oversikt over juridiske hovedutfordringer.
- Bentzen, Heidi Beate (2019). Oversikt over pågående initiativer for behandling av helseopplysninger.
- Bentzen, Heidi Beate (2019). Paneldebattant: Dialogue on the value of health data.
- Bentzen, Heidi Beate (2019). Recommendation on the protection and use of health-related data.
- Bentzen, Heidi Beate (2019). The Legal Regulation of Precision Medicine.
- Bentzen, Heidi Beate (2019). Trenger vi etiske retningslinjer for kunstig intelligens?.
- Bentzen, Heidi Beate (2019). Utfordringer med økt tilgjengelighet av genomiske data. Bestpractice Onkologi/Hematologi. ISSN 2245-0440.
- Høstmælingen, Njål & Bentzen, Heidi Beate (2019, 04. mars). – GDPR har blitt et symbol på konflikt. Dagens Medisin.
- 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
- Bentzen, Heidi Beate (2018, 25. oktober). Amid GDPR Implementation, European Effort Drafts Code of Conduct for Sharing Health Research Data. [Internett]. GenomeWeb.
- Bentzen, Heidi Beate (2018). Doing Right: Law and Precision Medicine.
- Bentzen, Heidi Beate (2018). Doing Right: Law and Precision Medicine.
- Bentzen, Heidi Beate (2018). Formålsbestemthet. Om prinsippet og implikasjonene av prinsippet.
- Bentzen, Heidi Beate (2018). Panelsamtale: Fra forskning og kunnskap til handling!.
- Bentzen, Heidi Beate (2018). Personvern og datadeling i medisinsk og helsefaglig forskning.
- Bentzen, Heidi Beate (2018). Session chair: Brave New World: Learning Health Systems.
- Bentzen, Heidi Beate (2018). Shedding Light on Legal Aspects of Genetic Data Processing in the Cloud.
- Aamdal, Steinar; Bentzen, Heidi Beate; Borge, Ole Johan; Erikstein, Bjørn K; Grimsgaard, Sameline; Hovig, Johannes Eivind; Myklebost, Ola & Widerberg, Ketil (2017). Åpne Nordens grenser for forskning og behandling. Aftenposten (morgenutg. : trykt utg.). ISSN 0804-3116.
- Bentzen, Heidi Beate (2017). European Union's Regulation of Genetic Data.
- Bentzen, Heidi Beate (2017). Genomics and the new EU data protection rules in a Nordic context.
- Bentzen, Heidi Beate (2017). Helsedata – store verdier eller medisinsk overvåkingssamfunn på fremmarsj?.
- Bentzen, Heidi Beate (2017, 02. oktober). Helsedata kan bli vårt nye gull. [Internett]. digi.no.
- Bentzen, Heidi Beate (2017, 27. september). Helsedata: Forskning vs personvern. [Radio]. NRK P1 Her og nå.
- Bentzen, Heidi Beate (2017). Legal Aspects of DNA Data Processing in International Databases.
- Bentzen, Heidi Beate (2017). Medisinsk forskning i genomikkens tidsalder.
- Bentzen, Heidi Beate (2017). Panel Debate: Trans-Atlantic data privacy relations and the new data protection law in the European Union.
- Bentzen, Heidi Beate (2016). Anonymization of Health Data.
- Bentzen, Heidi Beate (2016). DNA-datadeling – Hvor setter vi grensen?.
- Bentzen, Heidi Beate (2016). Discussion panel on regional and professional developments and challenges in genomics.
- Bentzen, Heidi Beate (2016). Genomic Research Review in Norway – REC’s Role.
- Bentzen, Heidi Beate (2016). Genomics and the new EU Data Protection rules in a Nordic context.
- Bentzen, Heidi Beate (2016). Goymsla av genomdata.
- Bentzen, Heidi Beate (2016). How well protected are samples and data from unintended uses?.
- Bentzen, Heidi Beate (2016). Human Biological Samples versus Personal Data.
- Bentzen, Heidi Beate (2016). REC's review of proposals concerning genome sequencing.
- Bentzen, Heidi Beate (2016). Rethinking Jurisdiction in Transnational Genomic Clouds.
- Bentzen, Heidi Beate (2016). Third party access to genetic databases.
- Borry, Pascal; Ljøsne, Isabelle Budin; Bentzen, Heidi Beate; Feeney, Oliver; Howard, Heidi; Loi, Michele; Mascalzoni, Deborah; Nordal, Salvör; Skirton, Heather; Sterckx, Sigrid; Stupka, Elia & Felzmann, Heike (2016). Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives.
- 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. Complex. ISSN 0806-1912. s 31- 67
- Bentzen, Heidi Beate (2015). Dynamisk samtykke – Forsøk på å gjøre samtykket praktikabelt.
- Bentzen, Heidi Beate (2015, 03. mars). Gentest kun på resept?. [Fagblad]. GENialt.
- Bentzen, Heidi Beate (2015). Legal Regulation of Personalized Cancer Medicine.
- 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 & Iyer, Anita Lakshmi (2015). Are Trusted Systems Always Transparent? – Transparency vs. Opacity.
- Bentzen, Heidi Beate; Iyer, Anita Lakshmi; Ljøsne, Isabelle Budin & Lindskog, Benedikte V (2015). NoSarC – ELSA: Why should we care what people think.
- Ljøsne, Isabelle Budin; Bentzen, Heidi Beate; Solbakk, Jan Helge & Myklebost, Ola (2015). Genomsekvensering i forskning krever ny tilnærming til samtykke. Tidsskrift for Den norske legeforening. ISSN 0029-2001. 135(22), s 2031- 2032 . doi: 10.4045/tidsskr.15.0944
- Bentzen, Heidi Beate (2014). Er genetiske opplysninger spesielt sensitive personopplysninger?.
- Bentzen, Heidi Beate (2014). Krever genetiske data særbehandling?.
- Bentzen, Heidi Beate (2014). Presse(gen)etikk - Bioteknologiloven § 5-8.
- Bentzen, Heidi Beate; Iyer, Anita Lakshmi & Ljøsne, Isabelle Budin (2014). Er du klar for persontilpasset medisin?. NRK Ytring.
- Bentzen, Heidi Beate (2013). Biologisk materiale som personopplysning. Lov & Data. ISSN 0800-7853. (115), s 12- 16
- Bentzen, Heidi Beate (2013). Rettslig regulering av persontilpasset medisin - Implikasjoner og barrierer for implementering.
- Bentzen, Heidi Beate (2013). Rettslige aspekter ved lagring av genetiske data.