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Ius Comparatum – Global Studies in Comparative Law
Lara Khoury
Adelle Blackett
Lukas Vanhonnaeker Editors
Volume 34
Series Editors
Katharina Boele-Woelki, Bucerius Law School, Hamburg, Germany
Diego P. Fernández Arroyo, Institut d’Études Politiques de Paris (Sciences Po), Paris,
France
Founding Editors
Jürgen Basedow, Max Planck Institute for Comparative and International Private
Law, Hamburg, Germany
George A. Bermann, Columbia University, New York, USA
Lukas Vanhonnaeker
Faculty of Law
McGill University
Montreal, QC, Canada
This Springer imprint is published by the registered company Springer Nature Switzerland AG.
The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland
Preface and Acknowledgment
From July 22 to 28, 2018, the 20th General Congress of the International Academy
of Comparative Law (IACL) was held in Japan, in the town of Fukuoka on the
beautiful southern Island of Kyūshū. For this occasion, Lara Khoury and Adelle
Blackett had the privilege of serving as general rapporteurs for a session in Medical
Law devoted to a discussion of the legal aspects of genetic testing regarding
insurance and employment.
Progress in genomic medicine holds the promise of enabling genetic risks to be
identified and treatment of diseases to be individually tailored to the needs of the
patient. However, the advances may lead to increased, and sometimes
underestimated, risks of privacy infringements and of discrimination. The risks are
particularly acute in the employment and insurance contexts.
To gain insight into these risks and regulatory approaches in different jurisdic-
tions worldwide, we devised a two-part questionnaire. The first part dealt with
existing generalist frameworks for regulating genetic testing in the insurance and
employment contexts. It sought to enable rapporteurs to consider regulatory
approaches in privacy law and antidiscrimination law, at the national and at appro-
priate regional and international levels. The second part of the questionnaire enabled
rapporteurs to consider the efficiency of the specific rights and obligations governing
the insurance and employment contexts, and whether they could effectively recon-
cile different stakeholders’ interests.
Colleagues from fifteen (15) jurisdictions answered the questionnaire and seven
(7) colleagues, including the two general rapporteurs, participated in a lively panel
discussion on the challenges posed by genetic testing in the contexts of insurance
and employment in a variety of countries as well as the solutions proposed, if any, in
these jurisdictions. We wish to express our appreciation to each of the contributors to
this collective project. This book is based primarily on the revised written contribu-
tions of several contributors to the IACL session, alongside individually solicited
chapters.
We thank the International Academy of Comparative Law and its President and
Secretary General, Professor Diego P. Fernández Arroyo, for the invitation to
v
vi Preface and Acknowledgment
undertake this report. We also thank the Association québécoise de droit comparé
and its President Nathalie Vézina, for their support. This volume has come to fruition
thanks to the support of a sterling team of research assistants who we are pleased to
acknowledge: Dr. Kathleen Hammond, Dr. Liam McHugh-Russell, Ms. Lian
Francis, Ms. Morgan McGinn, Ms. Emily Painter, Ms. Alexandra Klein, and Ms.
Jeanne Mayrand-Thibert. Finally, we express our gratitude to the institutions and
funding bodies that made our participation in the IACL Congress and the preparation
of this manuscript possible: McGill University’s Faculty of Law and its Dean Robert
Leckey, the Canada Research Chair in Transnational Labour Law and Development,
the Fonds de recherche du Québec, Société et culture (Research Team Support
Programme), and McGill University’s Paper Presentation Programme. This research
was undertaken in the institutional contexts of the Labour Law and Development
Research Laboratory (directed by Adelle Blackett) and the McGill Research Group
on Health and Law (co-convened by Lara Khoury).
vii
viii Préface et remerciements
ix
x Contents
Abstract The legal analysis of genetic testing in insurance and employment reveals
layered tensions that are central to the governance of contemporary social risk. The
development of genomic medicine promises much, through the ability to identify
risk on an individualized basis. However, individualization inevitably raises con-
cerns about privacy protection, all the more pressing when genetic testing is not a
fully refined, predictive technology. The individualization of risk yields still more
profound tensions to the extent that the Post-War consensus in many societies has
been to seek to transfer certain social risks away from the individual, by collectiv-
izing them through a range of state-supported social security mechanisms. On the
occasion of the 20th General Congress of the International Academy of Comparative
Law held on 24 July 2018 at Kyushu University in Fukuoka, Japan, legal experts
worldwide prepared reports on the legal aspects of genetic testing in the contexts of
insurance and employment, 14 of which are revised as chapters in this edited
volume. This general report highlights commonalities and differences between
legal regimes on their approach to genetic testing in these contexts. It chronicles
the justifications for and against the collection of genetic information by insurers and
employers, legal definitions, as well as the specific rights and obligations and
generalist frameworks that apply from a privacy rights and anti-discrimination
lens. This comparative endeavor concludes with a reflection on the relevance of
transnational standards to address the legal challenges of genetic testing in insurance
and employment.
1 Introduction1
1
Questions 1–2 of the Questionnaire.
2
Our questionnaire in French and English is available as an Annex to this chapter.
3
The national report for Belgium was prepared by Thierry Vansweevelt, Britt Weyts and Cindy
Cornelis (Vansweevelt, Weyts and Cornelis, Belgian national report); the national report for Brazil
was prepared by Mario Viola (Viola, Brazil national report); the national report for Canada was
prepared by Colleen Thrasher and Hilary Young (Thrasher and Young, Canada national report); the
national report for Cyrpus was prepared by Theodoros Trokanas (Trokanas, Cyprus national
report); the national report for Czechia was prepared by Filip Křepelka (Křepelka, Czechia national
report); the national report for Estonia was prepared by Kärt Pormeister (Pormeister, Estonia
national report); the national report for France was prepared by Christian Byk (Byk, France national
report); the national report for Greece was prepared by Lilian Mitrou (Mitrou, Greece national
report); the national report for Italy was prepared by Carlo Casonato and Marta Tomasi (Casonato
and Tomasi, Italy national report); the national report for Japan was prepared by Yuichiro Sato
(Sato, Japan national report); the national report for Poland was prepared by Monika Wałachowska
(Wałachowska, Poland national report); the national report for Quebec was prepared by Yann Joly
(Joly, Quebec national report); the national report for Switzerland was prepared by Valérie Junod
(Junod, Switzerland national report); the national report for Taiwan was prepared by Wenmay Rei
(Rei, Taiwan national report); the national report for the United Kingdom was prepared by Gerard
Porter (Porter, United Kingdom national report); insights with respect to challenges brought by
legal aspects of genetic testing in insurance and employment in the United States were provided by
Eric A. Feldman and Erin Quick after the Congress (Feldman and Quick, United States national
report). The national reports are on file with the authors.
4
For a fulsome account of how national orders tackle the questions raised by our theme, the reader is
invited to consult the revised contribution of some of the authors of the national reports: Khoury
et al. (2020).
Legal Aspects of Genetic Testing Regarding Insurance and Employment 5
5
Wałachowska, Poland national report.
6
This tension was raised in different ways by several national rapporteurs. See e.g. Thrasher and
Young, Canada national report; Byk, France national report.
7
See Universal Declaration of Human Rights, G.A. Res. 217A (III), U.N. Doc. A/810 at 71 (1948),
Arts 22, 23 and 25.
8
Byk, France national report.
9
Viola, Brazil national report; Thrasher and Young, Canada national report; Křepelka, Czechia
national report; Casonato and Tomasi, Italy national report; Sato, Japan national report; Rei, Taiwan
national report; Wałachowska, Poland national report; Mitrou, Greece national report; Pormeister,
Estonia national report; Joly, Quebec national report; Junod, Switzerland national report;
Vansweevelt, Weyts and Cornelis, Belgian national report; Porter, United Kingdom national report
(the Health and Safety Executive noted in 2007 that: “(w)e have not found any evidence that
employers are currently carrying out genetic testing in Britain (with the exception of the Ministry of
Defence for aircrew training)”).
10
Křepelka, Czechia national report; Wałachowska, Poland national report; Rei, Taiwan national
report; Byk, France national report.
11
Křepelka, Czechia national report (because of rapidly decreasing prices, genetic testing pro-
liferates in both domains).
6 L. Khoury et al.
frequency of genetic testing12: one national rapporteur suggests that if the cost of
genetic testing13 is covered, physicians may be more likely to prescribe genetic
tests.14 Moreover, if the national health insurance provides comprehensive coverage
for health services,15 there may be little incentive for private insurers to use genetic
testing.16 Finally, the availability of low cost direct-to-consumer genetic testing may
have an impact on the prevalence of genetic testing.17
Of course, how countries regulate genetic testing—forbidding it altogether for
employment and insurance purposes, or permitting it under strict conditions (Sect. 2
below)—is likely to influence the frequency of the testing.18 For instance, the
Quebec rapporteur observes that a conjunction of three factors could affect the
reliance upon genetic testing in the Canadian context: (1) the adoption of a specific
genetic anti-discrimination statute in 2017; (2) a commitment by Canadian insurers,
starting on 1 January 2018 to restrict the use of genetic test results for life coverage
equal to or above $250,000; and (3) the inclusion of genetic testing within the
services covered by the public health care system.19 Diving into the heart of our
topic, we find another factor influencing prevalence: insurer-induced fear of higher
premiums or exclusion of coverage not only affects the willingness of individuals to
undergo useful predictive genetic tests, but also affects the protection of their rights
as patients by restricting de facto their access to preventive health care20 and
equitable access to health care.21
12
Sato, Japan national report; Porter, United Kingdom national report; Joly, Quebec national report;
Rei, Taiwan national report; Křepelka, Czechia national report.
13
E.g. Porter, United Kingdom national report (access to genetic testing is free within the NHS
based upon clinical need—usually when there is relevant family history).
14
Suggested by Junod, Switzerland national report.
15
Rei, Taiwan national report.
16
Rei, Taiwan national report. The existence of a publicly funded healthcare system in Canada also
explains the limited amount of discriminatory treatment on the ground of genetic status and why it
took so long to adopt legislation on genetic discrimination: Joly, Quebec national report.
17
E.g. Porter, United Kingdom national report.
18
Thrasher and Young, Canada national report; Joly, Quebec national report; Junod, Switzerland
national report.
19
Joly, Quebec national report, citing to CLHIA, “Industry Code: Genetic Testing Information for
Insurance Underwriting” (11 January 2017) and Genetic Non-Discrimination Act, Canada, SC
2017, c 3.
20
Protected under article 35 of the Charter of Fundamental Rights of the European Union, OJ C
326/391, 26 October 2012 (Trokanas, Cyprus national report).
21
Protected under article 3 of the Oviedo Convention (Convention for the Protection of Human
Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine,
adopted 4 April 1997, CETS no 164): Trokanas, Cyprus national report. This could include their
right to access healthcare, where applicable: Pormeister, Estonia national report.
Legal Aspects of Genetic Testing Regarding Insurance and Employment 7
22
Question 19 of the Questionnaire.
23
Křepelka, Czechia national report.
24
Thrasher and Young, Canada national report. See also Feldman and Quick, United States national
report.
25
Vansweevelt, Weyts and Cornelis, Belgium national report. See also Byk, France national report
and Pormeister, Estonia national report (insurers, contrary to employers, may have a legitimate
interest in accessing an individual’s genetic information, especially in the context of life insurance
or long-term medical insurance).
26
Joly, Quebec national report; Porter, United Kingdom national report; Junod, Switzerland
national report.
27
Junod, Switzerland national report; Vansweevelt, Weyts and Cornelis, Belgium national report.
See also Sato, Japan national report (insurers frame genetic information collection as part and parcel
of a distributive justice scheme).
28
Raised by Vansweevelt, Weyts and Cornelis, Belgium national report. The concepts of self-
selection and anti-selection are explained by the rapporteurs on Belgium.
29
Raised by Vansweevelt, Weyts and Cornelis, Belgium national report.
8 L. Khoury et al.
In the employment context, justifications for the collection of genetic data30 are
generally formulated through the lens of the employers’ right to manage, which
includes ascertaining an employee’s ability to carry out the duties of the employment
relationship31 and helping to match employees with suitable jobs.32 A further
articulated justification is linked to employers’ responsibility to provide a safe
workplace: some argue that employers may need an employee’s disclosure in
order to protect the worker with a genetic disorder against specific risk factors
(e.g. if a particular task requires exposure to a particular substance).33 Others situate
the responsibility at the level of avoiding compromising the safety of others in the
workplace,34 or of arriving at an equitable organization and distribution of work.35 In
some case, the broader organization of work has an impact on genetic testing. In
Japan, it is argued that the collection of genetic information as part of the recruitment
process is justified by the “lifelong employment system” whereby employees are
expected to remain in the same employment until their retirement age (usually
60 years old).36 Yet in other contexts, the debate might be mute for distinct structural
reasons. In Czechia for instance, there is little incentive for employers to have
recourse to genetic testing for two seemingly contradictory reasons: the skilled
workforce available is limited and employment contracts can easily be terminated.37
Context matters.
Objections to the collection of genetic information are also varied, some being
general and others pertaining to each of the contexts under study. The main objection
common to both the employment and insurance sectors focuses on the danger of
genetic discrimination, which we discuss below.38 Another shared objection centres
30
Some jurisdictions report that no data is available on that topic (Casonato and Tomasi, Italy
national report) or that employers and insurers do not collect genetic information (Rei, Taiwan
national report).
31
Thrasher and Young, Canada national report; Joly, Quebec national report; Křepelka, Czechia
national report.
32
Feldman and Quick, United States national report.
33
Křepelka, Czechia national report; Junod, Switzerland national report; Vansweevelt, Weyts and
Cornelis, Belgian national report.
34
Křepelka, Czechia national report; Porter, United Kingdom national report; Junod, Switzerland
national report (safety of third parties). The Czechia report observes that causal links between
genetic disorders and workplace safety are largely speculative but notes that geneticists indicate that
early symptoms of Huntington’s disease could compromise work performance and safety
(Křepelka, Czechia national report).
35
Junod, Switzerland national report.
36
Sato, Japan national report.
37
Křepelka, Czechia national report.
38
Thrasher and Young, Canada national report; Casonato and Tomasi, Italy national report; Junod,
Switzerland national report; Vansweevelt, Weyts and Cornelis, Belgium national report. See also
Sato, Japan national report. Interestingly, the rapporteurs for the United States explain with respect
to the prohibition of genetic discrimination in both sectors, that the enactment of the Genetic
Information Nondiscrimination Act (PL 110–233, 21 May 2008, 122 Stat 881) was not a response to
actual discriminatory practices but instead was aimed at mitigating the public’s fear of future
Legal Aspects of Genetic Testing Regarding Insurance and Employment 9
on the state of the science: genetic testing often cannot conclusively predict a
person’s future health, as one may have a predisposition to a disease, but not ever
actually acquire it.39 Moreover, requiring disclosure and allowing the use of genetic
data in insurance and employment has broader health consequences: it may serve as
a disincentive for individuals who could receive life-saving information from pur-
suing genetic testing, out of the fear that they will be compelled to disclose the
results.40
In the insurance sector, opponents to genetic testing emphasize the dangers of
creating an uninsured “genetic underclass.”41 They also point to objections grounded
in the protection of privacy and personality rights42 and contractual freedom.43 They
worry about the consequence of disclosure for relatives whose health history may be
required for—or whose health risks might be revealed through—the testing.44 They
additionally raise the dangers of self-selection by the insurance seeker who is often
not in a position to obtain an accurate market assessment.45 Finally, in the employ-
ment context, it is argued that there are less intrusive means by which to assess the
reasonable ability of potential employees to perform the work required for their
employment, such as by asking about suitability and ability to perform certain
tasks.46
Next, we explore normative approaches that address specifically whether genetic
tests can be requested by employers and insurers or whether employers and insurers
can request existing genetic results. Given these rules are often influenced by
concerns about potential discrimination, we start by exploring anti-discrimination
and other human rights provisions dealing specifically with genetics (Sect. 2.3)
before moving on to other types of legislation, subordinate regulations, and soft
law instruments governing the use of genetic information and testing in the employ-
ment and insurance sectors (Sect. 2.4). But we look first at the treatment of the
various concepts associated with genetic testing under the international and national
laws surveyed (Sect. 2.2).
genetic discrimination and preventing such practices (Feldman and Quick, United States national
report).
39
Thrasher and Young, Canada national report; Junod, Switzerland national report; Vansweevelt,
Weyts and Cornelis, Belgium national report.
40
Vansweevelt, Weyts and Cornelis, Belgium national report (raised by the rapporteurs for the
insurance sector, but applicable to employment as well).
41
Porter, United Kingdom national report.
42
Vansweevelt, Weyts and Cornelis, Belgium national report; Sato, Japan national report.
43
Vansweevelt, Weyts and Cornelis, Belgium national report (the Belgium national report provides
an explanation of the impact on the contractual freedom of the policyholder). They also raise
possible suspicion on the part of the insurer if genetic information is not voluntarily disclosed.
44
Vansweevelt, Weyts and Cornelis, Belgium national report.
45
Vansweevelt, Weyts and Cornelis, Belgium national report.
46
Pormeister, Estonia national report.
10 L. Khoury et al.
The field of genetics is gaining in importance at the international and regional levels.
Relevant concepts—mainly genetic tests and genetic data/information48—have been
defined internationally, and those definitions have influenced definitions adopted
nationally. International law recognizes a “special status” for human genetic data.
Indeed, the non-binding49 United Nations Economic, Social and Cultural Organiza-
tion (UNESCO) 2003 International Declaration on Human Genetic Data (2003
UNESCO Declaration) invokes four reasons for this status, namely that it may:
(1) be predictive of genetic predispositions concerning individuals; (2) have a
significant impact on the family, including offspring, extending over generations,
and in some instances on the whole group to which the person concerned belongs;
(3) contain information the significance of which is not necessarily known at the time
of the collection of the biological samples; and, finally (4) have cultural significance
47
Questions 3 and 4 of the Questionnaire.
48
For ILO documents referring to genetic data and testing, see: ILO—Report of the Director-
General, Equality at Work: Tackling the Challenges (Global Report under the follow-up to the ILO
Declaration on Fundamental Principles and Rights at Work, ILO Conference, 96th Session 2007,
Report I(B)) at 48–49; ILO—Report of the Director-General, Equality at Work: The Continuing
Challenge (Global Report under the follow-up to the ILO Declaration on Fundamental Principles
and Rights at Work, ILO Conference, 100th Session 2011, Report I(B)) at 52 (the report briefly
identifies some regulatory developments in Serbia, Armenia, the United States and Canada with
respect to genetic status and testing); ILO—Protection of Workers’ Personal Data (ILO 1997) at 1, 4
et seq and 17; ILO, Technical and Ethical Guidelines for Workers’ Health Surveillance, Occupation
Safety and Health Series No. 72 (ILO 1998) at 7. It should be noted that the International Labor
Organization (ILO) increasingly distinguishes between genetic screening and monitoring (ILO—
Protection of Workers’ Personal Data (ILO 1997) at 17). UNESCO International Declaration on
Human Genetic Data, 16 October 2003; European Convention on Human Rights (1950); Charter of
Fundamental Rights of the European Union, OJ C 326/391, 26 October 2012, Art 21; 12th
Additional Protocol to the Convention (signed in 2000, not yet into force); Council directive
2000/78/EC establishing a general framework for equal treatment in employment and occupation,
OJ L 303, 2 December 2000; Council directive 2000/43/EC of 29 June 2000 implementing the
principle of equal treatment between persons irrespective of racial or ethnic origin, OJ L 180/22,
19 July 2000; Convention for the Protection of Human Rights and Dignity of the Human Being with
regard to the Application of Biology and Medicine, adopted 4 April 1997, CETS no 164; Treaty on
the Functioning of the European Union, OJ C 326/47, 26 October 2012, Art 10; Thrasher and
Young, Canada national report (Canadian Human Rights Act, RSC, 1985, c H-6); Trokanas, Cyprus
national report (referring to EU norms and the Oviedo Convention); Křepelka, Czechia national
report (Constitution of the Czech Republic); Mitrou, Greece national report (Additional Protocol to
the Convention on Human Rights and Biomedicine concerning Genetic Testing for Health Pur-
poses, adopted 27 November 2008, CETS no 203); Byk, France national report (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).
49
UNESCO refers to declarations as “purely moral or political commitment[s], binding States on
the basis of good faith.”
Legal Aspects of Genetic Testing Regarding Insurance and Employment 11
50
UNESCO International Declaration on Human Genetic Data, 16 October 2003, Art 4(a).
51
UNESCO International Declaration on Human Genetic Data, 16 October 2003, Art 4(b).
52
Others do not: Viola, Brazil national report; Porter, United Kingdom national report.
53
Thrasher and Young, Canada national report (but the cultural significance of genetic information
is neither explicitly nor implicitly recognized in Canada); Joly, Quebec national report; Trokanas,
Cyprus national report (“sensitive”); Křepelka, Czechia national report; Casonato and Tomasi, Italy
national report (through the prohibition); Sato, Japan national report; Rei, Taiwan national report
(“sensitive”); Wałachowska, Poland national report (“sensitive data”); Pormeister, Estonia national
report; Junod, Switzerland national report; Vansweevelt, Weyts and Cornelis, Belgium national
report; Byk, France national report; Mitrou, Greece national report (soft law).
54
As observed by: Joly, Quebec national report (Canadian Human Rights Act, RSC, 1985, c H-6);
Křepelka, Czechia national report; Pormeister, Estonia national report (Personal Data Protection
Act, RT I, 6 January 2016, 10, and Human Genes Research Act, RT I, 14 March 2014, 30, ss
25–27).
55
E.g. Rei, Taiwan national report (Personal Data Protection Act, Art 6: “sensitive personal data”).
56
As noted by Porter, United Kingdom national report and Wałachowska, Poland national report.
57
Mitrou, Greece national report (Arts 2, 5(5), 9(a), 21 and 25).
58
UNESCO International Declaration on Human Genetic Data, 16 October 2003, Art 2(i).
59
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.
60
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, Art 99(2).
12 L. Khoury et al.
61
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, Art 4(13). A second
definition is found in the preamble (Rec 34):
Genetic data should be defined as personal data relating to the inherited or acquired genetic
characteristics of a natural person which result from the analysis of a biological sample from
the natural person in question, in particular chromosomal, deoxyribonucleic acid (DNA) or
ribonucleic acid (RNA) analysis, or from the analysis of another element enabling equivalent
information to be obtained.
62
Some jurisdictions do not provide definitions of genetic information: Viola, Brazil national report;
Trokanas, Cyprus national report; Křepelka, Czechia national report; Sato, Japan national report;
Rei, Taiwan national report; Wałachowska, Poland national report; Mitrou, Greece national report;
Junod, Switzerland national report; Vansweevelt, Weyts and Cornelis, Belgian national report.
63
Pormeister, Estonia national report (Human Genes Research Act, RT I, 14 March 2014, 30, s 2
(9)). This definition applies in the contexts of insurance and employment in particular (see Human
Genes Research Act, RT I, 14 March 2014, 30, ss 26–27)). See also for genetic information:
Casonato and Tomasi, Italy national report (Authorization No. 8/2016 for the Processing of Genetic
Data—15 December 2016, point 1 (i)); Thrasher and Young, Canada national report (one can infer
from the definition of genetic test exposed below that “genetic information” includes DNA, RNA or
chromosomes and the predictions of disease or vertical transmission risk that they suggest); Joly,
Quebec national report. For other definitions of genetic data, see: Italy, Casonato and Tomasi, Italy
national report (Authorization No. 8/2016, point 1a).
64
Feldman and Quick, United States national report.
65
Genetic Information Nondiscrimination Act of 2008, PL 110–233, 21 May 2008, 122 Stat 881, s
201(4).
66
Feldman and Quick, United States national report.
67
UNESCO International Declaration on Human Genetic Data, 16 October 2003, Art 2(xii).
68
Thrasher and Young, Canada national report (the terminology is similar to article 2(i) and (xii) of
the UNESCO Declaration with a few differences); Joly, Quebec national report (the Genetic
Non-Discrimination Act does not use or define the terms “human genetic data” or “human
proteomic data”: Genetic Non-Discrimination Act, Canada, SC 2017, c 3, ss 2 and 8); Casonato
and Tomasi, Italy national report (similar but not exactly the same wording. There is no mention of
Legal Aspects of Genetic Testing Regarding Insurance and Employment 13
adopted narrower definitions than that contained in the 2003 UNESCO Declara-
tion.69 In Canada, the recent Genetic Non-Discrimination Act defines “genetic test”
as “a test that analyses DNA, RNA or chromosomes for purposes such as the
prediction of disease or vertical transmission risks, or monitoring, diagnosis or
prognosis.”70 Finally, the United States’ Genetic Information Nondiscrimination
Act defines “genetic test” as “analysis of human DNA, RNA, chromosomes, pro-
teins, or metabolites, that detects genotypes, mutations, or chromosomal changes”.71
Soft law instruments also provide definitions of “genetic information” and
“genetic testing,”72 such as in the United Kingdom where the 2014 Concordat and
Moratorium on Genetics and Insurance states that “predictive genetic tests” examine
the structure of chromosomes (cytogenetic tests) or detect abnormal patterns in the
DNA of specific genes (molecular tests).73
Proteomic or epigenetic data are generally not included in the definition of genetic
information, data or test(ing)74—although the UNESCO Declaration does provide a
proteomic data); Pormeister, Estonia national report (similar but not identical language. Estonian
law does not define “genetic testing” but has a definition for “genetic research” which is broader
(Human Genes Research Act, RT I, 14 March 2014, 30, s 2(7)). Contra: The Swiss Federal Act on
Human Genetic Testing of 8 October 2004 (in force since 1 April 2007, RS 810.12) adopts
definitions different from those of the Declaration; it focuses on the notion of genetic analysis
(analyse génétique): Junod, Switzerland national report.
69
E.g. Porter, United Kingdom national report (the definition provided in the Concordat and
Moratorium does not extend to “an indirect test for a gene product or other specific metabolite
that is primarily indicative of a specific genetic change”).
70
An Act to prohibit and prevent genetic discrimination, 1st sess, 42nd Parl, 2015, (assented to
4 May 2017), SC 2017, c 3, s 3), s 2.
71
Genetic Information Nondiscrimination Act of 2008, PL 110–233, 21 May 2008, 122 Stat 881, s
201(7).
72
Mitrou, Greece national report (see the definition of genetic data for insurance purposes of the
Greek National Bioethics Commission); Porter, United Kingdom national report (“genetic testing”
is used repeatedly throughout the ICO Employment Practices Code, but no clear definition is given).
73
Porter, United Kingdom national report (UK Government and the Association of British Insurers
(ABI), “Concordat and Moratorium on Genetics and Insurance’ (2014), available at: https://www.
abi.org.uk/globalassets/sitecore/files/documents/publications/public/2014/genetics/concordat-and-
moratorium-on-genetics-and-insurance.pdf. In the United Kingdom, the government has deliber-
ately avoided resorting to the general non-discrimination framework, rather relying on two soft law
instruments applying respectively in the employment and insurance sectors: Porter, United King-
dom national report. For other definitions of genetic screening, see: Casonato and Tomasi, Italy
national report (Authorization No. 8/2016, point 1 (g)). For other definitions of genetic test, see:
Casonato and Tomasi, Italy national report (Authorization No. 8/2016, point 1 (c)); Junod, Swit-
zerland national report (Federal Act on Human Genetic Testing of 8 October 2004, in force since
1 April 2007, RS 810.12, Art 3).
74
Thrasher and Young, Canada national report; Joly, Quebec national report (see Genetic
Non-Discrimination Act, Canada, SC 2017, c 3, ss 2 and 8); Casonato and Tomasi, Italy national
report; Porter, United Kingdom national report; Pormeister, Estonia national report (Human Genes
Research Act, RT I, 14 March 2014, 30, s 2(9) includes gene and hereditary characteristics,
however); Junod, Switzerland national report (no explicit reference in the Federal Act on Human
14 L. Khoury et al.
definition of human proteomic data.75 The rapporteurs for Canada and Quebec
observe that relevant definitions tend implicitly to include proteomic or epigenetic
data.76 In the United States, the Genetic Information Nondiscrimination Act explic-
itly refers to “an analysis of human (. . .) proteins” in its definition of “genetic test”.77
Do the definitions of the relevant terminology refer explicitly to the broader
concept of family history? Many do not.78 However, in Estonia for instance, family
history is covered by the definition of genetic data under the Personal Data
Protection Act if the family history reveals genetic information regarding a specific,
directly or indirectly identifiable, individual.79
National orders distinguish between genetic tests in two distinct ways. A first
distinction pertains to whether tests are diagnostic (used to identify existing health
problems) or predictive (used to predict disease susceptibility). In general, defini-
tions in national laws do not make this distinction.80 However, the Oviedo Conven-
tion—which Cyprus, Czechia, Estonia, France, Greece, and Switzerland have
ratified81—does so by limiting the use of predictive tests82 to health purposes or
Genetic Testing of 8 October 2004 (in force since 1 April 2007, RS 810.12) but it applies to any
results arising from genetic testing).
75
The Declaration defines it as: “[i]nformation pertaining to an individual’s proteins including their
expression, modification and interaction” (Art 2 (ii)).
76
Thrasher and Young, Canada national report; Joly, Quebec national report (some but not all
proteomic and epigenetic data).
77
Genetic Information Nondiscrimination Act of 2008, PL 110–233, 21 May 2008, 122 Stat 881, s
201(7).
78
Thrasher and Young, Canada national report; Joly, Quebec national report; Casonato and Tomasi,
Italy national report; Porter, United Kingdom national report (the ABI Concordat and Moratorium
does not include family history, but section 21(f) explicitly allows insurers to seek, with the person’s
consent, access to appropriate family medical history, inter alia, to accurately price the risk from any
health information an applicant discloses).
79
Pormeister, Estonia national report (Human Genes Research Act, RT I, 14 March 2014, 30, ss 2
(9) and 4(2)–(4) of the Personal Data Protection Act (RT I, 6 January 2016, 10)). In Cyprus,
“genetic information” and “genetic test” are not defined in legislation but soft law instruments
include family history implicitly or explicitly: Trokanas, Cyprus national report. In Greece, family
history is regarded as data pertaining to the health of a person if it allows explaining, assessing or
predicting the health status of this person: Mitrou, Greece national report.
80
Thrasher and Young, Canada national report; Joly, Quebec national report (s 2 of the Genetic
Non-Discrimination Act (SC 2017, c 3) refers to both diagnostic and predictive tests); Casonato and
Tomasi, Italy national report.
81
See https://www.coe.int/en/web/conventions/full-list/-/conventions/treaty/164/signatures?p_
auth¼lczs9fbu
82
Defined as: “(t)ests 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” (Convention for the Protection of Human Rights and Dignity of the
Human Being with regard to the Application of Biology and Medicine, adopted 4 April 1997, CETS
no 164, Art 12).
Legal Aspects of Genetic Testing Regarding Insurance and Employment 15
83
Subject to appropriate genetic counselling: Convention for the Protection of Human Rights and
Dignity of the Human Being with regard to the Application of Biology and Medicine, adopted
4 April 1997, CETS no 164, Art 12 (mentioned in Mitrou, Greece national report and Křepelka,
Czechia national report).
84
It refers to predictive tests as pre-symptomatic genetic analysis (“analyses génétiques
présymptomatiques”): Junod, Switzerland national report (Federal Act on Human Genetic Testing
of 8 October 2004, in force since 1 April 2007, RS 810.12, Art 3(d)).
85
Porter, United Kingdom national report (an exception is found in section 21(c)(iii) of the ABI
Concordat and Moratorium).
86
Trokanas, Cyprus national report (“National Bioethics Committee’s Opinion with respect to
predictive health-related medical information before the conclusion of private (life or health)
insurance” of 22 January 2008: by classifying medical history under medical methods and practices
to predict diseases. This Opinion is classified as a “soft law” instrument. Trokanas, Cyprus national
report.
87
Feldman and Quick, United States national report (Genetic Information Nondiscrimination Act of
2008, PL 110–233, 21 May 2008, 122 Stat 881).
88
Pormeister, Estonia national report (the Human Genes Research Act (RT I, 14 March 2014, 30)
implicitly distinguishes through the way it is structured); Porter, United Kingdom national report
(the ICO Employment Practices Code does not, but the ABI Concordat and Moratorium establishes
that customers are not required to disclose predictive or genetic test results acquired as part of
clinical research). Other countries do not make such distinction: Trokanas, Cyprus national report;
Casonato and Tomasi, Italy national report; Mitrou, Greece national report (but the Greek national
report provides a caveat).
89
Thrasher and Young, Canada national report and Joly, Quebec national report. See also
Wałachowska, Poland national report (a distinction was made in a 2012 Bill between tests occurring
within a clinical setting, for research purposes, and tests sold to consumers; a working group
recommended testing for medical purposes only).
90
Junod, Switzerland national report. See also Pormeister, Estonia national report (parts of the
Human Genes Research Act apply only to research (i.e. to the EGB), and others apply more
generally to genetic testing).
16 L. Khoury et al.
91
Thrasher and Young, Canada national report (Canadian Charter of Rights and Freedoms, Part I
of the Constitution Act, 1982 being Schedule B to the Canada Act 1982 (UK), 1982, c 11, esp ss
7-8, 15); Trokanas, Cyprus national report (Constitution of the Republic of Cyprus of 1960);
Mitrou, Greece national report (Greek Constitution, Art 5).
92
Mitrou, Greece national report (Act 2251/1994 on the protection of consumers).
93
Rei, Taiwan national report (Biobank Management Act of 2010); Mitrou, Greece national report
(Recommendation on Biobanks in biomedical Research the Greek National Bioethics Committee).
94
Casonato and Tomasi, Italy national report (articles 5 and 8 of the Statute of the Workers’ Rights
(Law no. 300 of May 20, 1970, “Rules on the protection of the freedom and dignity of workers and
of trade union freedom and union activity in the workplace, and rules on the public employment
service”).
95
Křepelka, Czechia national report (the report explores this possibility); Junod, Switzerland
national report (Penal Code, Art 321, protecting medical secrecy); Byk, France national report
(Penal Code, Art 225-3(1), protecting against discrimination).
96
Viola, Brazil national report; Trokanas, Cyprus national report; Křepelka, Czechia national report;
Sato, Japan national report; Rei, Taiwan national report; and the UK, Porter, United Kingdom
national report (except in the insurance sector through soft law).
97
Viola, Brazil national report.
98
Genetic Non-Discrimination Act, Canada, SC 2017, c 3: Thrasher and Young, Canada national
report; Joly, Quebec national report (the Genetic Non-discrimination Act amends the Canadian
Labour Code and the Canadian Human Rights Act, RSC, 1985, c H-6). This Genetic
Non-Discrimination Act was found to be an invalid exercise of federal powers by the Quebec
Court of Appeal in December 2019, after the Canadian and Quebec reports were drafted: Dans
l'affaire du: Renvoi relatif à la Loi sur la non-discrimination génétique, 2018 QCCA 2193. The
Supreme Court of Canada heard the arguments on appeal of this decision in October 2019 but has
not yet rendered its decision: https://www.scc-csc.ca/case-dossier/info/sum-som-eng.aspx?
cas¼38478.
99
General Authorisation No. 8/2016 for the Processing of Genetic Data: Casonato and Tomasi,
Italy national report (General Authorisation No. 8/2016 for the Processing of Genetic Data—
15 December 2016 (issued by the Garante per la protezione dei dati personali)).
100
Human Genes Research Act, RT I, 14 March 2014, 30 (ss 25–27 for insurance and employment:
Pormeister, Estonia national report).
Legal Aspects of Genetic Testing Regarding Insurance and Employment 17
101
Junod, Switzerland national report (Federal Act on Human Genetic Testing of 8 October 2004, in
force since 1 April 2007, RS 810.12, Arts 26 to 28).
102
Byk, France national report.
103
Vansweevelt, Weyts and Cornelis, Belgium national report (Insurance Act of 4 April 2014,
Belgian State Gazette 30 April 2014, Arts 58 and 64 and Act of 28 January 2003 concerning
medical examinations that are carried out within the framework of industrial relations, Belgian State
Gazette, 9 April 2003).
104
Feldman and Quick, United States national report.
105
Questions 8, 9 and 11 of the Questionnaire.
106
Feldman and Quick, United States national report.
107
International Covenant on Civil and Political Rights of 16 December 1966; International
Covenant on Economic, Social and Cultural Rights of 16 December 1966 (the United States have
not ratified this International Covenant); Convention on the Elimination of All Forms of Discrim-
ination against Women, 18 December 1979 (the United States have not ratified the Convention);
International Convention on the Elimination of All Forms of Racial Discrimination, adopted on
21 December 1965.
108
See in particular the UN Convention on the Rights of Persons with Disabilities of
13 December 2006.
18 L. Khoury et al.
and Human Rights of 11 November 1997 (1997 UNESCO Human Genome Decla-
ration), which states that “[e]veryone has a right to respect for their dignity and for
their rights regardless of their genetic characteristics” and that 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.”109 In addition, the 2003 UNESCO Declaration provides that
“[e]very 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.”110
The United Nations specialized agency, the International Labour Organization
(ILO), has similarly issued a non-binding Code of practice on the protection of
workers’ personal data. The Code of practice stresses “the need to develop data
protection provisions which specifically address the use of workers’ personal data in
order to safeguard the dignity of workers, protect their privacy and guarantee their
fundamental right to determine who may use which data for what purposes and
under what conditions.”111
At the regional level in Europe, the Charter of Fundamental Rights of the
European Union112 prohibits any discrimination based on “genetic features” by
EU institutions when applying EU law.113 The EU General Data Protection Regu-
lation 2016/679 emphasizes the importance of preventing discriminatory effects on
natural persons on the basis of genetic or health status, or measures having such an
effect.114 The regional human rights body, the Council of Europe, has issued the
Oviedo Convention on Human Rights and Biomedicine, which also prohibits any
form of discrimination against a person “on grounds of his or her genetic heri-
tage.”115 The American Convention on Human Rights provides generalist protec-
tion, and is discussed under Sect. 3 below.
109
UNESCO Universal Declaration on Human Genome and Human Rights of 11 November 1997,
Arts 2(a) and 6.
110
UNESCO International Declaration on Human Genetic Data of 16 October 2003, Art 7.
111
ILO—Code of practice on the Protection of Workers’ Personal Data (ILO 1997), preamble at
1. Although, the ILO does not address the specific issue of genetic discrimination, one could argue
that it includes genetic information in the notion of data.
112
The Charter of Fundamental Rights of the European Union (OJ C 326/391, 26 October 2012)
covers all of the rights and freedoms enshrined in the ECHR as well as others flowing from the ECJ
case law, constitutional traditions of EU countries and other instruments.
113
Charter of Fundamental Rights of the European Union, OJ C 326/391, 26 October 2012, Art 21
(1). See also Arts 3 (integrity of the person), 7 (respect for private and family life) and 8 (protection
of personal data).
114
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, para 71 of
the Preamble.
115
Convention for the Protection of Human Rights and Dignity of the Human Being with regard to
the Application of Biology and Medicine, adopted 4 April 1997, CETS no 164, Art 11.
Legal Aspects of Genetic Testing Regarding Insurance and Employment 19
116
Thrasher and Young, Canada national report (Genetic Non-Discrimination Act, Canada, SC
2017, c 3, s 9); Trokanas, Cyprus national report (in application of Convention for the Protection of
Human Rights and Dignity of the Human Being with regard to the Application of Biology and
Medicine, adopted 4 April 1997, CETS no 164, Art 11); Křepelka, Czechia national report
(in application of the Charter of Fundamental Rights and Freedoms of the European Union, Art
11 of the Oviedo Convention, Art 11 and the Law on Specific Medical Services); Junod, Switzerland
national report (Federal Act on Human Genetic Testing of 8 October 2004, in force since 1 April
2007, RS 810.12, Art 4; Vansweevelt, Weyts and Cornelis, Belgium national report (Act of 10 May
2007 to combat certain forms of discrimination, Belgian State Gazette 30 may 2007, Art 3).
117
Thrasher and Young, Canada national report (Genetic Non-Discrimination Act, Canada, SC
2017, c 3, s 9. Provincial human rights legislations do not address genetic discrimination specifi-
cally. But before the Act was adopted, the case law in the Canadian province of Quebec started to
recognize genetic information as a possible ground for discrimination: Joly, Quebec national report
and cases cited).
118
Vansweevelt, Weyts and Cornelis, Belgium national report (Art 3) (discrimination can be
justified, however).
119
Casonato and Tomasi, Italy national report.
120
Wałachowska, Poland national report (“undoubtedly” encompasses discrimination based on
genetic history).
121
Byk, France national report (Penal Code, Arts 225-1 and 225-3). There are also provisions
applying to employment (the report only covers insurance). See also Junod, Switzerland national
report (Federal Act on Human Genetic Testing of 8 October 2004, in force since 1 April 2007, RS
810.12, but provides no sanction; the latter has to be found within other norms); Pormeister, Estonia
national report.
122
Trokanas, Cyprus national report (Cyprus National Bioethics Committee’s Opinion of 22 January
2008); Mitrou, Greece national report (Greek National Bioethics Commission, Explanatory Report
of the Recommendation on the collection and use of genetic data).
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