Genetic Discrimination: A Case for a European Legislative Response?
In: European Journal of Health LawWith rapid scientific and technological advances, a new genetic era is emerging. However, these advances raise ethical and legal issues, particularly genetic discrimination, that may threaten advancing science in the absence of appropriate regulation. There is currently no concrete legislative position in this area at eu level, but rather a patchwork of diverging legislative approaches amongst Member States. Genetic discrimination has been singled out as an area of reform in Europe as evidenced, for example in eu Charter of Fundamental Rights, Article 21.1 prohibiting discrimination based on ‘genetic features.’ The United Nations Convention on the Rights of Persons with Disabilities also informs this debate and may spur legislative action. From a transatlantic perspective, the United States’ federal legislation (Genetic Information Non Discrimination Act) is noteworthy. Considering scientific and technological developments, the rights at stake and the various regulatory benchmarks, this paper explores the regulation of genetic information in the eu.
Purchase
Buy instant access (PDF download and unlimited online access):
Institutional Login
Log in with Open Athens, Shibboleth, or your institutional credentials
Personal login
Log in with your brill.com account
-
2
F.S. Collins and V.A. Mc Kusick, ‘Implications of the Human Genome Project for Medical Science’, Journal of the American Medical Association 285(5) (2001) 540.
-
5
D. Euhus, ‘Genetic Testing Today’, Annals of Surgical Oncology 21 (2014) 3209.
-
6
I. Rabino, ‘Genetic Testing and its Implications: Human Genetics Researchers Grapple with Ethical Issues’, Science, Technology and Human Values 28(2) (2003) 365.
-
7
E.W. Almqvist, ‘A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington’s disease’, American Journal of Human Genetics 64(5) (1999) 1293.
-
9
G. Laurie, ‘Challenging Medical-Legal Norms: The Role of Autonomy, Confidentiality, and Privacy in Protecting Individual and Familial Group Rights in Genetic Information’, The Journal of Legal Medicine 22(1) (2001) 27.
-
11
S. Carr, ‘Invisible Actors: Genetic Testing and Genetic Discrimination in the Workplace’, University of Arkansas Law Review 30 (2007-2008) 1.
-
13
R.F. Rich and J. Ziegler, ‘Genetic Discrimination in Health Insurance — Comprehensive Legal Solutions for a (Not so) Special Problem?’, Indiana Health Law Review 5(5) (2005) 12.
-
15
T. Takala and H.A. Gylling, ‘Who should know our genetic makeup and why?’ Journal of Medical Ethics 26 (2000) 171; Rabino, supra note 6, 365.
-
19
E. Parens and A. Asch, ‘Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations’, Mental Retardation and Developmental Disabilities Research Reviews 9 (2003) 40.
-
21
G. Laurie, ‘The Most Personal Information of All: An Appraisal of Genetic Privacy in the Shadow of the Human Genome Project’, International Journal of Law, Policy and Family 10 (1996) 74-101; M. Taylor, Genetic Data and the Law: A Critical Perspective on Privacy Protection (Cambridge: Cambridge University Press, 2012).
-
26
S. Soina, ‘Genetic testing legislation in Western Europe — a fluctuating regulatory target’, Journal of Community Genetics 3 (2012) 143.
-
28
Genetic Integrity Act No. 2006: 351.
-
31
Human Genome Research Law of 13 June 2002.
-
40
Disability Act 2005 Act No 14 of 2005.
-
50
A. de Paor, ‘Regulating Genetic Information — Exploring the Options in Legal Theory’, European Journal of Health Law 21 (2014) 425, 429.
-
59
Genetic Integrity Act No. 2006: 351.
-
70
Law on Medical Examinations of 1997, Article 3.
-
71
Trudo Lemmens, ‘Selective Justice, Genetic Discrimination, and Insurance: Should We Single Out Our Genes in Our Laws?’, McGill Law Journal 45 (2000) 347, 360.
-
72
Disability Act 2005.
-
76
A. de Paor, ‘The Irish Legislative Response to Genetic Discrimination — an analysis of Part 4 of the Disability Act 2005: time for reform?’, Dublin University Law Journal 38(1) (2015).
-
83
A. Hendriks, ‘(Pre-) employment Medical Examinations and the Law, with Particular Reference to the European Union’, European Journal of Health Law 1 (1994) 229, 232.
-
84
F.W. Scharpf, ‘Community and autonomy: Multi-level policy-making in the European Union’, Journal of European Public Policy 1(2) (1994) 219.
-
88
A.J. Menendez, ‘Chartering Europe: Legal Status and Policy Implications of the Charter of Fundamental Rights of the European Union’, Journal of Common Market Studies 40(3) (2002) 471, 472-473.
-
99
J.L. Roberts, ‘Preempting Discrimination: Lessons from the Genetic Information Nondiscrimination Act’, Vanderbilt Law Review 63(2) (2010) 439.
-
103
G.I. Wolf, ‘Efforts towards “An Ever Closer” European Union Confront Immigration Barriers’, Indiana Journal of Global Legal Studies 4(1) (1996) 223; De Paor and O’Mahony, supra note 23.
-
106
L. Slaughter, ‘The Genetic Information Non Discrimination Act: Why your personal genetics are still vulnerable to discrimination’, The Surgical Clinics of North America 88(4) (2008) 737.
-
111
Collins and Mc Kusick, supra note 2, 540.
-
114
De Paor, supra note 50, 451.
-
119
M. Rotenberg and D. Jacobs, ‘Updating the law of information privacy: the new framework of the European Union’, Harvard Journal of Law and Public Policy 36(2) (2013) 605, 623.
-
141
L. Waddington, ‘A New Era in Human Rights Protection in the European Community: The Implications the United Nations Convention on the Rights of Persons with Disabilities for the European Community’, Maastricht Faculty of Law Working Paper 4 (2007) 11.
-
144
Gonclaves and Gameiro, supra note 109, 1.
-
145
S. Douglas-Scott, ‘The European Union and Human Rights after the Treaty of Lisbon’, Human Rights Law Review 11 (4) (2011) 645, 681.
-
161
T. Lemke, ‘‘A slap in the face.’ An exploratory story of genetic discrimination in Germany’, Genomics Law and Policy 5(2) (2009) 22.
-
162
J. Burgermeister, ‘Teacher was refused job because relatives have Huntington’s disease’, British Medical Journal 327 (2003) 827.
-
165
K.L. Garver and B. Garver, ‘The Human Genome Project and Eugenic Concerns’, American Journal of Human Genetics 54 (1994) 148.
| All Time | Past Year | Past 30 Days | |
|---|---|---|---|
| Abstract Views | 1014 | 159 | 3 |
| Full Text Views | 305 | 12 | 0 |
| PDF Views & Downloads | 187 | 33 | 0 |
Genetic Discrimination: A Case for a European Legislative Response?
In: European Journal of Health LawWith rapid scientific and technological advances, a new genetic era is emerging. However, these advances raise ethical and legal issues, particularly genetic discrimination, that may threaten advancing science in the absence of appropriate regulation. There is currently no concrete legislative position in this area at eu level, but rather a patchwork of diverging legislative approaches amongst Member States. Genetic discrimination has been singled out as an area of reform in Europe as evidenced, for example in eu Charter of Fundamental Rights, Article 21.1 prohibiting discrimination based on ‘genetic features.’ The United Nations Convention on the Rights of Persons with Disabilities also informs this debate and may spur legislative action. From a transatlantic perspective, the United States’ federal legislation (Genetic Information Non Discrimination Act) is noteworthy. Considering scientific and technological developments, the rights at stake and the various regulatory benchmarks, this paper explores the regulation of genetic information in the eu.
| All Time | Past Year | Past 30 Days | |
|---|---|---|---|
| Abstract Views | 1014 | 159 | 3 |
| Full Text Views | 305 | 12 | 0 |
| PDF Views & Downloads | 187 | 33 | 0 |