THE CHALLANGES OF REGULATING THE USE OF PERSONAL DATA FROM GENETIC TESTS FOR INSURANCE PURPOSES
DOI:
https://doi.org/10.25234/pv/14875Keywords:
insurance, genetic screening, personal data, comparative law, the European Union, General Data Protection RegulationAbstract
The paper deals with the issue of using genetic tests for insurance purposes. After introductory remarks, the paper provides an overview of various international and European legal sources both on data protection in general, and on the protection of data from genetic tests. The paper then researches into different solutions proposed by comparative law concerning the use of data from genetic tests for insurance purposes. Some solutions explicitly ban the use of genetic tests for insurance purposes (France, Austria, Portugal, Croatia), while others adopt a more liberal approach, allowing for its use (the USA, the UK, Germany). It is concluded that personal data protection does not exclude the possibility using data from genetic tests for insurance purposes, which proves the need for a common EU approach to the issue.
References
Adjin-Tettey E, 'Potential for Genetic Discrimination in Access to Insurance: Is There a Dark Side to Increased Availability of Genetic Information?' (2013) 50(3) Alberta Law Review 577
Aikin A, 'Contradiction in Terms: Genetic Nondiscrimination and Long-Term Care Insurance' (2016) 53(4) University of Louisville Law Review 597
Andrijašević S i Račić-Žlibar T, Rječnik osiguranja (Masmedia 1997)
Bevanda M i Čolaković M, 'Pravni okvir za zaštitu osobnih podataka (u vezi sa zdravljem) u pravu Europske unije' (2016) 37(1) Zbornik Pravnog fakulteta Sveučilišta u Rijeci 125
Bodiroga Vukobrat N i Horak H, 'Pravni okvir zaštite podataka u digitalnoj ekonomiji: ograničenje ili poticaj zaštiti osobnih podataka' u Zvonimir Slakoper, Maja Bukovac Puvača i Gabrijela Mihelčić (eds), Liber amicorum Aldo Radolović: Zbornik radova u čast prof. dr. sc. Aldu Radoloviću (Pravni fakultet u Rijeci 2018) 301–315
Bodiroga-Vukobrat N and Horak H, 'Challenges of Personalized Medicine: Socio-Legal Disputes and Possible Solutions' in Nada Bodiroga-Vukobrat and others (eds), Personalized Medicine: A New Medical and Social Challenge (Springer 2016) 31–51
Borry P and others, 'Legislation on Direct-to-consumer Genetic Testing in Seven European Countries' (2012) 20 European Journal of Human Genetics 715
Bukovac Puvača M i Demark A, 'Pravo na zaštitu osobnih podataka kao temeljno pravo i odgovornost za štetu zbog njegove povrede' (2019) 40(1) Zbornik Pravnog fakulteta Sveučilišta u Rijeci 287
Ćurković M, Ugovor o osiguranju: Komentar odredaba Zakona o obveznim odnosima (Inženjerski biro 2017)
Davey J, 'Genetic Discrimitantion in Insurance: Lessons from Test Achats' in Gerard Quinn, Aisling de Paor and Peter Blanck (eds), Genetic Discrimination, Transatlantic Perpectives on the Case for European Legal Response (Routledge 2015) 143–60
De Paor A and Ferri D, 'Regulating Genetic Discrimination in the European Union, Pushing the EU into Unchartered Territory or Unshering in a New Genomic Era' (2015) 17(1) European Journal of Law Reform 14
De Paor A, 'Advancing Science and Controlling the Misuse of Genetic Information in Employment and Insurance: Towards an Effective European Union Regulatory Framework' (PhD thesis, School of Law, National University of Ireland 2013)
Dulčić K i Bodiroga Vukobrat N, 'Zaštita osobnih podataka pacijenata u europskom i hrvatskom pravu' (2008) 29(1) Zbornik Pravnog fakulteta Sveučilišta u Rijeci 371
Fukuda R and Takada F, 'Legal regulations on health-related direct-to-consumer genetic testing in 11 countries' (2018) 48 Kitasato Medical Journal 52
Godard B and others, 'Genetic Information in Testing Insurance and Employment: Technical, Social and Ethical Issues' (2003) 11(2) European Journal of Human Genetics 123
Ivančević K, 'Diskriminacija i osiguranje' u Slobodan Jovanović i Pierpaolo Marano (eds), Pravo i praksa osiguranja: izazovi, nove tehnologije i korporativno upravljanje: zbornik radova XIX. savjetovanja (Udruženje za prava osiguranja Srbije i Udruženje osiguravača Srbije 2018) 278–96
Josipović T, Privatno pravo Europske unije: opći dio (Narodne novine 2020)
Keglević A, Ugovorno pravo osiguranja (Školska knjiga 2016)
Kolakairinou L and others, 'Legislation of Direct-to-consumer Genetic Testing in Europe: A Fragmented Regulatory Landscape' (2018) 9 Journal of Community Genetics 117
Pavić D, Ugovorno pravo osiguranja (Tectus 2009)
Sándor J (ed), UNESCO i bioetika: zbirka osnovnih dokumenata (Center for Ethics and Law in Biomedicine 2008)
Stirton R, 'Insurance, Genetic Information and the Future of Industry Self-Regulation in the UK' (2012) 4(2) Law, Innovation and Technology 212
Taylor M, Genetic Data and the Law: A critical Perspective on Privacy Protection (Cambridge University Press 2012)
Varga O and others, 'Definitions of Genetic Testing in European Legal Documents' (2012) 3 Journal of Community Genetics 125
REGULATIONS AND DOCUMENTS
Code des assurances = Zakonik o osiguranju (FR) <http://www.legifrance.gouv.fr/affichCode.do?cidTexte=LEGITEXT000006073984> pristupljeno 26. siječnja 2021.
Code on Genetic Testing and Insurance (UK) <https://www.abi.org.uk/data-and-resources/tools-and-resources/genetics/code-on-genetic-testing-and-insurance> pristupljeno 26. siječnja 2021.
Council of Europe, Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Genetic Testing for Health (Council of Europe Treaty Series No 203, 2008) <https://rm.coe.int/1680084824> pristupljeno 26. siječnja 2021.
Gentechnikgesetz (BGBl 510/1994, 73/1998, 98/2001, 94/2002, 73/2004, 127/2005, 13/2006, 111/2012, 114/2012, 35/2015, 92/2015, 126/2015, 112/2016, 37/2018, 59/2018) (AT)
Gesetz über den Verisherungsvertrag (Versicherungsvertragsgesetz – VVG) vom 23 November 2007 (BGBl I S. 2631), das zuletzt durch Artikel 2 des Gesetzes vom 10 Juli 2020 (BGBl I S. 1653) geändert worden ist (DE)
Gesetz über genetische Untersuchungen bei Menschen (Gendiagnostikgesetz – GenDG) vom 31 Juli 2009 (BGBl I S. 2529, 3672) das zuletzt durch Artikel 23 des Gesetzes vom 20 November 2019 (BGBl I S. 1626) geändert worden ist (DE)
Insurance Contracts Act (No 80, 1984, compilation date 1 July 2016) (AU) <https://www.legislation.gov.au/Details/C2016C00820> pristupljeno 26. siječnja 2021.
International Declaration on Human Genetic Data (16 October 2003) <https://en.unesco.org/themes/ethics-science-and-technology/human-genetic-data> pristupljeno 20. siječnja 2021.
Ispravak Uredbe (EU) 2016/679 Europskog parlamenta i Vijeća od 27. travnja 2016. o zaštiti pojedinaca u vezi s obradom osobnih podataka i o slobodnom kretanju takvih podataka te o stavljanju izvan snage Direktive 95/46/EZ (Opća uredba o zaštiti podataka) [2018] SL L127/2
Moratorium on Genetic Tests in Life Insurance (FSC Standard No 11, 21 June 2019) (AU) <https://www.fsc.org.au/resources-category/standard/1779-standard-11-moratorium-on-genetic-tests-in-life-insurance/file> pristupljeno 26. siječnja 2021.
Odluka o objavi Opće deklaracije o ljudskim pravima (NN–MU 12/09) (HR)
Opća deklaracija o ljudskim pravima (usvojena i proglašena Rezolucijom Opće skupštine Ujedinjenih naroda 217A/III, 10. prosinca 1948.)
Personal Genetic Information and Health Information Act (Law 12/2005 of 26 January) (PT) <https://www.eshg.org/fileadmin/www.eshg.org/documents/Europe/LegalWS/Portugal_Law-UnofficialEnglishTranslation.pdf> pristupljeno 26. siječnja 2021.
Povelja Europske unije o temeljnim pravima (2016/C 202/02) [2016] SL C202/389
Principles of European Insurance Contract Law – PEICL (1 November 2015) <https://www.uibk.ac.at/zivilrecht/forschung/evip/restatement/sprachfassungen/peicl-en.pdf> pristupljeno 26. siječnja 2021.
Recommendation CM/Rec(2016)8 of the Committee of Ministers to the member States on the processing of personal health-related data for insurance purposes, including data resulting from genetic tests (Adopted by the Committee of Ministers on 26 October 2016 at the 1269th meeting of the Ministers’ Deputies) <https://search.coe.int/cm/Pages/result_details.aspx?ObjectID=09000016806b2c5f> pristupljeno 26. siječnja 2021.
The Genetic Information Nondiscrimination Act of 2008, Public Law 110-233, 122 Stat 881 (21 May 2008) (US)
The Patient Protection and Affordable Care Act of 2010, Public Law 111-148, 124 Stat 119, (23 March 2010) (US)
Ugovor o funkcioniranju Europske unije (pročišćena verzija) [2016] SL C202/47
Universal Declaration on Bioethics and Human Rights (adopted by UNESCO's General Conference on 19 October 2005) <https://en.unesco.org/themes/ethics-science-and-technology/bioethics-and-human-rights> pristupljeno 26. siječnja 2021.
Universal Declaration on the Human Genome and Human Rights (UNESCO, 11 November 1997) <https://en.unesco.org/themes/ethics-science-and-technology/human-genome-and-human-rights> pristupljeno 26. siječnja 2021.
Uredba (EU) 2016/679 Europskog parlamenta i Vijeća od 27. travnja 2016. o zaštiti pojedinaca u vezi s obradom osobnih podataka i o slobodnom kretanju takvih podataka te stavljanju izvan snage Direktive 95/46/EZ (Opća uredba o zaštiti podataka) [2016] SL L119/1
Uredba o dobrovoljnom zdravstvenom osiguranju (SG 108/2008, 49/2009) (RS)
Zakon o obveznim odnosima (NN 35/2005, 41/2008, 125/2011, 78/2015, 29/2018) (HR)
Zakon o potvrđivanju Konvencije o zaštiti ljudskih prava i dostojanstva ljudskog bića u pogledu primjene biologije i medicine: Konvencije o ljudskim pravima i biomedicini, Dodatnog protokola uz Konvenciju o zaštiti ljudskih prava i dostojanstva ljudskog bića u pogledu primjene biologije i medicine o zabrani kloniranja ljudskih bića i Dodatnog protokola uz Konvenciju o zaštiti ljudskih prava i dostojanstva ljudskog bića u pogledu primjene biologije i medicine, u vezi presađivanja organa i tkiva ljudskog porijekla (NN–MU 13/2003) (HR)
Zakon o potvrđivanju Konvencije za zaštitu ljudskih prava i temeljnih sloboda i Protokola br. 1., 4., 6., 7., i 11. uz Konvenciju za zaštitu ljudskih prava i temeljnih sloboda (NN–MU 18/1997) (HR)
Zakon o prevenciji i dijagnostici genetičkih bolesti, genetički uslovljenih anomalija i retkih bolesti (SG 8/2015) (RS)
Zakon o provedbi Opće uredbe o zaštiti osobnih podataka (NN 42/2018) (HR)
Zakon o suzbijanju diskriminacije (NN 85/2008, 112/2012) (HR)
Zakon o zaštiti prava pacijenata (NN 169/2004, 37/2008) (HR)
JUDGMENTS AND OTHER DECISIONS
Case C-236/09 Association belge des Consommateurs Test-Achats ASBL, Yann van Vugt, Charles Basselier v Conseil des ministres [1 March 2011] ECLI:EU:C:2011:100
INTERNET SOURCES
– – Code on Genetic Testing and Insurance: Annual Report 2019 (The Association of British Insurers 2019) <https://www.abi.org.uk/globalassets/files/publications/public/genetics/abi-2019-annual-report-on-code-on-genetic-testing-and-insurance.pdf> pristupljeno 26. siječnja 2021.
Chart of signatures and ratifications of Treaty 203 (Additional Protocol to the Convention on Human Rights and Biomedicine concerning Genetic Testing for Health Purposes) <https://www.coe.int/en/web/conventions/full-list/-/conventions/treaty/203/signatures?p_aut h=rLWABa1h> pristupljeno 26. siječnja 2021.
Zhang S, 'The Loopholes in the Law Prohibiting Genetic Discrimination' The Atlantic (13 March 2017) <https://www.theatlantic.com/health/archive/2017/03/genetic-discrimination-law-gina/519216/> pristupljeno 26. siječnja 2021.
Downloads
Published
Issue
Section
License
Copyright (c) 2021 Maja Bukovac Puvača, Loris Bealnić
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
Authors retain the copyright on the papers published in the Journal, but grant the right of first publication to the Journal. Papers accepted for publication or already published in Pravni vjesnik of the Faculty of Law in Osijek may be published by the author(s) in other publications only with proper notice of its previous publication in Pravni vjesnik.
