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Legal Aspects of Genetic Testing Regarding Insurance and Employment in Cyprus

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Genetic Testing and the Governance of Risk in the Contemporary Economy

Part of the book series: Ius Comparatum - Global Studies in Comparative Law ((GSCL,volume 34))

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Abstract

This text aims to explore the uncharted waters of using genetic testing in the context of insurance and employment in Cyprus. Cyprus’ existing legislative vacuum is filled by recourse to international, European, and national texts, of both a hard and soft law nature. The text begins by presenting different definitions of the terms “genetic testing” and “genetic data.” Then, it examines the need for special status recognition for genetic data and raises the key question of whether genetic testing poses a threat to legal principles and human rights. Next, it explores which legally binding instruments of European and Cypriot origin apply to genetic testing performance in general (e.g. the Council of Europe’s Oviedo Convention), as well as to the processing of the resulting genetic data (e.g. the EU General Data Protection Regulation). Finally, the knotty problem of unregulated genetic testing for insurance and employment purposes is addressed through Opinions of national authorities (e.g. the Cyprus National Bioethics Committee) or advisory bodies (e.g. the European Group of Ethics), as well as Recommendations from international organisations (e.g. the Council of Europe).

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Notes

  1. 1.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and the free movement of such data, and repealing Directive 95/46/EC, OJ L 119/1, 4 May 2016 (Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016).

  2. 2.

    UNESCO International Declaration on Human Genetic Data, adopted unanimously and by acclamation on 16 October 2003 by the 32nd session of the General Conference of UNESCO (UNESCO International Declaration on Human Genetic Data).

  3. 3.

    UNESCO International Declaration on Human Genetic Data, Art 2(xii).

  4. 4.

    UNESCO International Declaration on Human Genetic Data, Art 2(i).

  5. 5.

    Council of Europe, Recommendation No R(92)3 of the Committee of Ministers to Member States on Genetic Testing and Screening for Health Care Purposes, adopted by the Committee of Ministers on 10 February 1992 at the 470th meeting of the Ministers’ Deputies. Recommendation No R(92)3 had been preceded by Recommendation No R(90)13 on the specific issue of prenatal genetic screening, prenatal genetic diagnosis and associated genetic counseling.

  6. 6.

    See Council of Europe, Recommendation No R(92)3 of the Committee of Ministers to Member States on Genetic Testing and Screening for Health Care Purposes, adopted by the Committee of Ministers on 10 February 1992 at the 470th meeting of the Ministers’ Deputies, Principles and Recommendations, para a.

  7. 7.

    Unfortunately, Cyprus has not yet signed this Protocol, as is also the case with the overwhelming majority of the Council of Europe Member States.

  8. 8.

    See 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 test, adopted on 26 October 2016, para 4.

  9. 9.

    European Group on Ethics in Science and New Technologies (EGE), “Ethical Aspects of Generic Testing in the Workplace”, Opinion of the European Group on Ethics in Science and New Technologies to the European Commission no 18, 28 July 2003 (EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”).

  10. 10.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 1(e).

  11. 11.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 1.2.

  12. 12.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, paras 1(g) and 1.2.3.

  13. 13.

    Council of Europe, Committee of Ministers, Recommendation No R(97)5 on the Protection of Medical Data, adopted by the Committee of Ministers on 13 February 1997 at the 584th meeting of the Ministers’ Deputies.

  14. 14.

    Council of Europe, Committee of Ministers, Recommendation No R(97)5 on the Protection of Medical Data, adopted by the Committee of Ministers on 13 February 1997 at the 584th meeting of the Ministers’ Deputies, Art 1: “the expression ‘medical data’ refers to all personal data concerning the health of an individual. It refers also to data which have a clear and close link with health as well as to genetic data”.

  15. 15.

    Council of Europe, Committee of Ministers, Recommendation No R(97)5 on the Protection of Medical Data, adopted by the Committee of Ministers on 13 February 1997 at the 584th meeting of the Ministers’ Deputies, Art 1:

    the expression ‘genetic data’ refers to all data, of whatever type, concerning the hereditary characteristics of an individual or concerning the pattern of inheritance of such characteristics within a related group of individuals. It also refers to all data on the carrying of any genetic information (genes) in an individual or genetic line relating to any aspect of health or disease, whether present as identifiable characteristics or not.

  16. 16.

    Council of Europe, Committee of Ministers, Explanatory Memorandum to Recommendation No R(97)5 on the Protection of Medical Data, adopted by the Committee of Ministers on 13 February 1997 at the 584th meeting of the Ministers’ Deputies, Appendix to the draft recommendation, para 43.

  17. 17.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 1.1.3.

  18. 18.

    Opinion of the Cyprus National Bioethics Committee with regard to predictive health-related medical information before the conclusion of private (life or health) insurance contracts of 22 January 2008, para 2, http://www.bioethics.gov.cy/Moh/cnbc/cnbc.nsf/All/16C6A7E6891495BCC2257CB30042BD04?OpenDocument.

  19. 19.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Art 4(13). See also Directive (EU) 2016/680 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data by competent authorities for the purposes of the prevention, investigation, detection or prosecution of criminal offences or the execution of criminal penalties, and on the free movement of such data, and repealing Council Framework Decision 2008/977/JHA, OJ L 119/89, 4 May 2016, Art 3(12) and Regulation (EU) 2018/1725 of the European Parliament and of the Council of 23 October 2018 on the protection of natural persons with regard to the processing of personal data by the Union institutions, bodies, offices and agencies and on the free movement of such data, and repealing Regulation (EC) No 45/2001 and Decision No 1247/2002/EC, OJ L 295/39, 21 November 2018, Art 3(17).

  20. 20.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Recital no 34. See also Directive (EU) 2016/680 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data by competent authorities for the purposes of the prevention, investigation, detection or prosecution of criminal offences or the execution of criminal penalties, and on the free movement of such data, and repealing Council Framework Decision 2008/977/JHA, OJ L 119/89, 4 May 2016, Recital no 23.

  21. 21.

    Burge (2013), p. 523.

  22. 22.

    For relative discussion see O’Neill (2004), pp. 101 ff; Burge (2013), p. 522 ff; McGuire et al. (2008), p. 495; Evans and Burke (2008), pp. 500–501.

  23. 23.

    O’Neill (2004), p. 101.

  24. 24.

    O’Neill (2004), p. 105.

  25. 25.

    O’Neill (2004), p. 105.

  26. 26.

    UNESCO International Declaration on Human Genetic Data, Art 4(a)(i).

  27. 27.

    UNESCO International Declaration on Human Genetic Data, Art 4(a)(iii).

  28. 28.

    UNESCO International Declaration on Human Genetic Data, Art 4(a)(ii).

  29. 29.

    UNESCO International Declaration on Human Genetic Data, Art 4(a)(iv).

  30. 30.

    UNESCO International Declaration on Human Genetic Data, Art 4(b).

  31. 31.

    Cyprus enacted Law 138 (I)/2001 in conformity with its obligation to transpose Directive 95/46/EC of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data. The Law was published in the Official Journal of The Republic of Cyprus Annex I (I), no 3549, 23 November 2001.

  32. 32.

    See The Working Party, “ARTICLE 29 Date Protection Working Party”, Working Document on Genetic Data, 12178/03/EN WP 91, adopted on 17 March 2004, part III. Cf Section 1180(a)(1) of the United States Genetic Information Non-Discrimination Act (GINA) (enacted by the 110th United States Congress, 21 May 2008, 122 Stat 881): “Genetic information shall be treated as health information”.

  33. 33.

    Law 138 (I)/2001, Official Journal of The Republic of Cyprus Annex I (I), no 3549, 23 November 2001, Art 2:

    (…)

    “sensitive data” mean data concerning racial or ethnic origin, political opinions, religious or philosophical beliefs, trade-union membership, health, sexual life or sexual orientation, criminal prosecution and convictions.

  34. 34.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Recitals nos 10 and 51.

  35. 35.

    Protocol amending the Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data opened for signature on 10 October 2018, CETS no 223. The Amending Protocol has not been signed by Cyprus yet.

  36. 36.

    Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data opened for signature on 28 January 1981, entered into force on 1 October 1985, ETS no 108. This Convention was the first binding international instrument to protect individuals against abuses related to the collection and processing of personal data. It was opened for signature on 28 January 1981 and entered into force on 1 October 1985. The Treaty was signed by Cyprus on 25 June 1986 and was ratified on 22 February 2002 with Law 28 (III)/2001 published in the Official Journal of The Republic of Cyprus Annex I (III), No 3549, 23 November 2001. Law 28 (III)/2001 entered into force on 1 June 2002.

  37. 37.

    Constitution of the Republic of Cyprus of 1960, Article 28(2):

    Every person shall enjoy all the rights and liberties provided for in this Constitution without any direct or indirect discrimination against any person on the ground of his community, race, religion, language, sex, political or other convictions, national or social dissent, birth, colour, wealth, social class or any ground whatsoever, unless there is express provision to the contrary in this Constitution.

  38. 38.

    European Convention for the Protection of Human Rights and Fundamental Freedoms, as amended by Protocols nos 11 and 14, was adopted on 4 November 1950 and entered into force on 3 September 1953, CETS no 005, Art 14:

    The enjoyment of the rights and freedoms set forth in this Convention shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status.

  39. 39.

    Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine was adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164. The Oviedo Convention and its Additional Protocol on the Prohibition of Cloning Human Beings was signed by Cyprus on 30 September 1998, was ratified on 20 March 2002 with Law 31 (III)/2001 and entered into force on 1 July 2002. The Convention was implemented via Cypriot Law 31 (III)/2001.

  40. 40.

    Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted on 4 April 1997, in force since 1 December 1999, CETS no 164, para 76.

  41. 41.

    Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted on 4 April 1997, in force since 1 December 1999, CETS no 164, para 77.

  42. 42.

    By virtue of article 6 of the Treaty of Lisbon, the Charter of Fundamental Rights of the European Union has become legally binding.

  43. 43.

    Charter of Fundamental Rights of the European Union, OJ C 326/391, 26 October 2012, Art 21(2):

    Any discrimination based on any ground such as sex, race, colour, ethnic or social origin, genetic features, language, religion or belief, political or any other opinion, membership of a national minority, property, birth, disability, age or sexual orientation shall be prohibited.

  44. 44.

    Directive (EU) 2016/680 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data by competent authorities for the purposes of the prevention, investigation, detection or prosecution of criminal offences or the execution of criminal penalties, and on the free movement of such data, and repealing Council Framework Decision 2008/977/JHA, OJ L 119/89, 4 May 2016, Recital no 23: “Any discrimination based on genetic features should in principle be prohibited”.

  45. 45.

    Regulation (EU) 2018/1725 of the European Parliament and of the Council of 23 October 2018 on the protection of natural persons with regard to the processing of personal data by the Union institutions, bodies, offices and agencies and on the free movement of such data, and repealing Regulation (EC) No 45/2001 and Decision No 1247/2002/EC, OJ L 295/39, 21 November 2018, Art 76(1)(b): “Discrimination against natural persons on the basis of such personal data shall be prohibited”.

  46. 46.

    UNESCO, Universal Declaration on the Human Genome and Human Rights, adopted on 11 November 1997, Art 6: “No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity”.

  47. 47.

    UNESCO International Declaration on Human Genetic Data, Art 7:

    Non-discrimination and non-stigmatization.

    (a) Every effort should be made to ensure that human genetic data and human proteomic data are not used for purposes that discriminate in a way that is intended to infringe, or has the effect of infringing human rights, fundamental freedoms or human dignity of an individual or for purposes that lead to the stigmatization of an individual, a family, a group or communities.

    (b) In this regard, appropriate attention should be paid to the findings of population-based genetic studies and behavioural genetic studies and their interpretations.

  48. 48.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.3.

  49. 49.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.

  50. 50.

    Cf S and Marper v United Kingdom (2009) 48 EHRR 50, paras 70 ff. The Court held that the retention of cellular samples and DNA profiles by the authorities after the end of criminal proceedings constitutes an interference with the right to respect the private lives of the individuals concerned (European Convention for the Protection of Human Rights and Fundamental Freedoms, as amended by Protocols nos 11 and 14, adopted on 4 November 1950, entered into force on 3 September 1953, CETS no 005, Art 8(1)). See also Taylor (2012), p. 74.

  51. 51.

    Constitution of the Republic of Cyprus of 1960, Article 15(1): “Everyone has the right to respect for his private and family life”.

  52. 52.

    European Convention for the Protection of Human Rights and Fundamental Freedoms, as amended by Protocols nos 11 and 14, adopted on 4 November 1950, entered into force on 3 September 1953, CETS no 005, Art 8(1):

    Right to respect for private and family life.

    1. Everyone has the right to respect for his private and family life, his home and his correspondence

    (…).

  53. 53.

    Charter of Fundamental Rights of the European Union, OJ C 326/391, 26 October 2012, Art 7: “Respect for private and family life. Everyone has the right to respect for his or her private and family life, home and communications”.

  54. 54.

    Charter of Fundamental Rights of the European Union, OJ C 326/391, 26 October 2012, Art 8: “1. Everyone has the right to the protection of personal data concerning him or her”. The right to data protection is rooted in the right to privacy. The Charter breaks new ground in recognizing the right to data protection as a right separate from the right to privacy (See Kranenborg 2014, para 08.21).

  55. 55.

    Opinion of the Cyprus National Bioethics Committee with regard to predictive health-related medical information before the conclusion of private (life or health) insurance contracts of 22 January 2008, para 2, http://www.bioethics.gov.cy/Moh/cnbc/cnbc.nsf/All/16C6A7E6891495BCC2257CB30042BD04?OpenDocument. As explained elsewhere in the same Opinion, it is irrelevant whether the infringement of the right to ignorance results from regular medical tests (e.g. X-rays, ultrasounds, blood tests etc.) or from genetic tests (para 4.2.).

  56. 56.

    Opinion of the Cyprus National Bioethics Committee with regard to predictive health-related medical information before the conclusion of private (life or health) insurance contracts of 22 January 2008, para 2, http://www.bioethics.gov.cy/Moh/cnbc/cnbc.nsf/All/16C6A7E6891495BCC2257CB30042BD04?OpenDocument.

  57. 57.

    Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, adopted on 4 April 1997, into force since 1 December 1999, CETS no 164, Art 10(2): “Everyone is entitled to know any information collected about his or her health. However, the wishes of individuals not to be so informed shall be observed”.

  58. 58.

    Law 1 (I)/2005, OJ Annex 1 No 3943, 7 January 2005, pp 1–26, Article 10(4): “Τhe patient shall not deemed to have waived his right to know, unless he has asked it in writing”.

  59. 59.

    UNESCO, Universal Declaration on the Human Genome and Human Rights, adopted on 11 November 1997, Art 5(c): “The right of each individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected”.

  60. 60.

    See, for example, article 35 of the Charter of Fundamental Rights of the European Union (OJ C 326/391, 26 October 2012):

    Everyone has the right of access to preventive health care and the right to benefit from medical treatment under the conditions established by national laws and practices. A high level of human health protection shall be ensured in the definition and implementation of all the Union's policies and activities.

    See also Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, Art 3: “Equitable access to health care. Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality”.

  61. 61.

    See above footnote 39.

  62. 62.

    Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, Art 12:

    Predictive Genetic Tests. Tests which are predictive of genetic diseases or which serve either to identify the subject as a carrier of a gene responsible for a disease or to detect a genetic predisposition or susceptibility to a disease may be performed only for health purposes or for scientific research linked to health purposes, and subject to appropriate genetic counselling.

  63. 63.

    The Drafters urge that Member States develop appropriate professional standards in the field of genetic tests, in the spirit of Recommendations of the Council of Europe, No. R (90) 13 on the specific issue of prenatal genetic screening, prenatal genetic diagnosis and associated genetic counselling and No. R(92)3 on genetic testing and screening for health care purposes (Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, para 80).

  64. 64.

    Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, para 84.

  65. 65.

    Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted on 4 April 1997, entered into force  on 1 December 1999, CETS no 164, para 85. It should be reminded that the Drafters of Recommendation No R(92)3 on genetic testing and screening for health care purposes had already cautioned against insurers using genetic tests for the conclusion or modification of contracts: “Principle 7 – Insurance. Insurers should not have the right to require genetic testing or to enquire about results of previously performed tests, as a pre-condition for the conclusion or modification of an insurance contract”.

  66. 66.

    Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, para 85.

  67. 67.

    Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, Art 26:

    Restrictions on the exercise of the rights. 1. No restrictions shall be placed on the exercise of the rights and protective provisions contained in this Convention other than such as are prescribed by law and are necessary in a democratic society in the interest of public safety, for the prevention of crime, for the protection of public health or for the protection of the rights and freedoms of others.

    This provision echoes partially the provisions of Article 8(2) of the European Convention for the Protection of Human Rights and Fundamental Freedoms (as amended by Protocols nos 11 and 14, adopted on 4 November 1950, entered into force on 3 September 1953, CETS no 005). See Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, para 149.

  68. 68.

    Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, para 87.

  69. 69.

    Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, para 152.

  70. 70.

    Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, para 153.

  71. 71.

    Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, Art 5:

    General rule. An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it. This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks. The person concerned may freely withdraw consent at any time.

  72. 72.

    Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, para 88.

  73. 73.

    On the nature of genetic counseling, see Council of Europe, Recommendation No R(92)3 of the Committee of Ministers to Member States on Genetic Testing and Screening for Health Care Purposes, adopted by the Committee of Ministers on 10 February 1992 at the 470th meeting of the Ministers’ Deputies, Principle 3.

  74. 74.

    Council of Europe, Recommendation No R(92)3 of the Committee of Ministers to Member States on Genetic Testing and Screening for Health Care Purposes, adopted by the Committee of Ministers on 10 February 1992 at the 470th meeting of the Ministers’ Deputies, Principle 3.

  75. 75.

    Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, Art 14: “Non-selection of sex. The use of techniques of medically assisted procreation shall not be allowed for the purpose of choosing a future child’s sex, except where serious hereditary sex-related disease is to be avoided”.

  76. 76.

    Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, adopted on 4 April 1997, entered into force on 1 December 1999, CETS no 164, Art 25: “Parties shall provide for appropriate sanctions to be applied in the event of infringement of the provisions contained in this Convention”.

  77. 77.

    Law 69 (I)/2015 on the Application of Medically Assisted Reproduction, OJ Annex 1 No 4510, 15 May 2015, pp. 849–878.

  78. 78.

    See the official website of the Cyprus Medical Association at https://www.cyma.org.cy.

  79. 79.

    See the official website of the Cyprus Society for Human Genetics at https://www.cshg.org.cy.

  80. 80.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, paras 2.2 and 2.7.

  81. 81.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.1.

  82. 82.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.5.

  83. 83.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.6.

  84. 84.

    Obviously, at the time of elaboration of the said EGE Opinion and certainly before the year 2003.

  85. 85.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.9.

  86. 86.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.10.

  87. 87.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.8.

  88. 88.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.13.

  89. 89.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.11.

  90. 90.

    In other words, the performance of a genetic test shall not be misused as a means of excusing the employer from his statutory duty to improve conditions in the working environment.

  91. 91.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.12.

  92. 92.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.14.

  93. 93.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, paras 2.16 and 2.7.

  94. 94.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.15.

  95. 95.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.15.

  96. 96.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.18.

  97. 97.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.20.

  98. 98.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 2.19.

  99. 99.

    See above footnote 31.

  100. 100.

    This idea was inspired by Commission Nationale Informatique et Libertés (2017), p. 59.

  101. 101.

    Directive (EU) 2016/680 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data by competent authorities for the purposes of the prevention, investigation, detection or prosecution of criminal offences or the execution of criminal penalties, and on the free movement of such data, and repealing Council Framework Decision 2008/977/JHA, OJ L 119/89, 4 May 2016, Art 10:

    Processing of personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade union membership, and the processing of genetic data, biometric data for the purpose of uniquely identifying a natural person, data concerning health or data concerning a natural person’s sex life or sexual orientation shall be allowed only where strictly necessary, subject to appropriate safeguards for the rights and freedoms of the data subject, and only:

    1. (a)

      where authorised by Union or Member State law;

    2. (b)

      to protect the vital interests of the data subject or of another natural person; or

    3. (c)

      where such processing relates to data which are manifestly made public by the data subject.

  102. 102.

    See above footnote 24.

  103. 103.

    See Article 6(1) Directive 95/46/EC of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data, which the GDPR repeals.

  104. 104.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Recital no 32: “Consent should cover all processing activities carried out for the same purpose or purposes. When the processing has multiple purposes, consent should be given for all of them”.

  105. 105.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Recital no 32: “By a written statement, including by electronic means, or an oral statement”.

  106. 106.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Recital no 32: “Silence, pre-ticked boxes or inactivity should not therefore constitute consent”. An opt-out model is generally not permissible (Voigt and Von dem Bussche 2017, p. 95).

  107. 107.

    Voigt and Von dem Bussche (2017), p. 93.

  108. 108.

    This means that the data subject should explicitly consent to genetic data being processed (Voigt and Von dem Bussche 2017, p. 112).

  109. 109.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Art 6(1): “Processing shall be lawful only if and to the extent that at least one of the following applies: (a) the data subject has given consent to the processing of his or her personal data for one or more specific purposes;”.

  110. 110.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Recital no 51: “In addition to the specific requirements for such processing, the general principles and other rules of this Regulation should apply, in particular as regards the conditions for lawful processing”. See also Voigt and Von dem Bussche (2017), p. 112.

  111. 111.

    EGE Opinion “Ethical Aspects of Genetic Testing in the Workplace”, para 1.9.

  112. 112.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Recital no 43.

  113. 113.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Recital no 42.

  114. 114.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Art 9(2):

    Paragraph 1 shall not apply if one of the following applies:

    (…)

    (h) processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3;”.

  115. 115.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Recital no 53.

  116. 116.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Art 9(3):

    Personal data referred to in paragraph 1 may be processed for the purposes referred to in point (h) of paragraph 2 when those data are processed by or under the responsibility of a professional subject to the obligation of professional secrecy under Union or Member State law or rules established by national competent bodies or by another person also subject to an obligation of secrecy under Union or Member State law or rules established by national competent bodies.

  117. 117.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Art 9(2):

    Paragraph 1 shall not apply if one of the following applies:

    (…)

    (i) processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy;

  118. 118.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Art 9(2)(a): “(…) except where Union or Member State law provide that the prohibition referred to in paragraph 1 may not be lifted by the data subject;”.

  119. 119.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Art 6(4):

    Where the processing for a purpose other than that for which the personal data have been collected is not based on the data subject’s consent or on a Union or Member State law which constitutes a necessary and proportionate measure in a democratic society to safeguard the objectives referred to in Article 23(1), the controller shall, in order to ascertain whether processing for another purpose is compatible with the purpose for which the personal data are initially collected, take into account, inter alia: (a) any link between the purposes for which the personal data have been collected and the purposes of the intended further processing; (b) the context in which the personal data have been collected, in particular regarding the relationship between data subjects and the controller; (c) the nature of the personal data, in particular whether special categories of personal data are processed, pursuant to Article 9, or whether personal data related to criminal convictions and offences are processed, pursuant to Article 10; (d) the possible consequences of the intended further processing for data subjects; (e) the existence of appropriate safeguards, which may include encryption or pseudonymisation.

  120. 120.

    In this spirit, see Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016, Recital no 50.

  121. 121.

    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 test, adopted on 26 October 2016.

  122. 122.

    See above footnote 61.

  123. 123.

    See Explanatory Memorandum to 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 test, adopted on 26 October 2016, para 15, point 39.

  124. 124.

    Explanatory Memorandum to 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 test, adopted on 26 October 2016, para 16, point 40:

    “law” includes codes, legislation, regulations, guidelines and statutory rules, as well as codes of practice and agreements that are publicly available and have been agreed between the Member State and insurers. It also includes legal rulings, contract law and common law that relates to the principles of insurance contracts.

  125. 125.

    Explanatory Memorandum to 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 test, adopted on 26 October 2016, para 16, point 40.

  126. 126.

    For a presentation of selected European national legislations and USA federal legislation see Trokanas (2011), pp. 557–574.

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Authors and Affiliations

  1. Hellenic Open University, School of Social Sciences, Patras, Greece

    Theodoros Trokanas

  2. University of Macedonia, School of Business Administration, Department of Accounting and Finance, Thessaloniki, Greece

    Theodoros Trokanas

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  1. Faculty of Law, McGill University, Montreal, QC, Canada

    Lara Khoury

  2. Faculty of Law, McGill University, Montreal, QC, Canada

    Adelle Blackett

  3. Faculty of Law, McGill University, Montreal, QC, Canada

    Lukas Vanhonnaeker

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Trokanas, T. (2020). Legal Aspects of Genetic Testing Regarding Insurance and Employment in Cyprus. In: Khoury, L., Blackett, A., Vanhonnaeker, L. (eds) Genetic Testing and the Governance of Risk in the Contemporary Economy. Ius Comparatum - Global Studies in Comparative Law, vol 34. Springer, Cham. https://doi.org/10.1007/978-3-030-43699-5_5

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