Labour rights of the rare diseases population ‒ breaking the glass ceiling

Keywords: rare diseases population, labour status, anti-discrimination law, legal classification, dignity

Abstract

This paper aims to introduce a legal framework for exercising one of the most basic socio-economic rights of people with rare diseases: the right to decent work. Considering the specificity of the medical and, consequently, social status of the people affected, the appropriate labour-law measures need to be determined. Applying the comparative and normative method along with the contemporary anti-discrimination principle, the labour status of the rare diseases population has been analysed based on the proposed classification in legal terms. As a precondition for labour legislation, new Serbian healthcare legislation on rare diseases should be supported through the process of implementation to reduce adverse cases as effectively as possible, advance genetic and other clinical diagnoses, and thus increase the efficiency of available medical treatment. Concerning public health policy, updated registries and better health statistics should be created. These activities require certain amendments to both general and specialist labour legislation (disability legislation), aiming to include patients with rare diseases in the working (and social) environment without discrimination.

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References

Aymé, S., Bellet, B., & Rath, A. (2015). Rare diseases in ICD11: making rare diseases visible in health information systems through appropriate coding. Orphanet Journal of Rare Diseases, 10, 35. https://doi.org/10.1186/s13023-015-0251-8

Besag, J., & Newell, J. (1991). The Detection of Clusters in Rare Diseases. Journal of the Royal Statistical Society Series A, 154(1), 143-155. https://doi.org/10.2307/2982708

Billings, P. R., Kohn, M. A., de Cuevas, M., Beckwith, J., & Alper, J. S. (1992). Discrimination as a Consequence of Genetic Testing. The American Journal of Human Genetics, 50(3), 476-482.

Council Recommendation 2009/C, 151/02 on an action in the field of rare diseases (2009, June 08). Retrieved from https://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF

De la Rosa, S. (2005). The Open Method of Coordination in the New Member States—the Perspectives for its Use as a Tool of Soft Law. European Law Journal, 11(5), 618-640. https://doi.org/10.1111/j.1468-0386.2005.00279.x

Directive 2011/24/EU of the European Parliament and of the Council on the application of patients’ rights in cross-border health care (2011, March 09). Retrieved from https://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:088:0045:0065:EN:PDF

Doyle, B. (1993). Employment Rights, Equal Opportunities and Disabled Persons: The Ingredients of Reform. Industrial Law Journal, 22(2), 89-103. https://doi-org.eres.qnl.qa/10.1093/ilj/22.2.89

Erwin, C. (2008). Legal update: living with the Genetic Information Nondiscrimination Act. Genetics in Medicine, 10(12), 869-873. https://doi.org/10.1097/GIM.0b013e31818ca4e7

European Organization for Rare Diseases (2005). Rare Diseases: understanding this Public Health Priority. Retrieved from https://www.eurordis.org/IMG/pdf/princeps_document-EN.pdf

Felce, D., & Perry, J. (1995). Quality of life: Its definition and measurement. Research in Developmental Disabilities, 16(1), 51-74. https://doi.org/10.1016/0891-4222(94)00028-8

Gostin, L. O. (1991). Genetic discrimination: The use of genetically based diagnostic and prognostic tests by employers and insurers. American Journal of Law & Medicine, 17(1-2), 109-144.

Gostin, L. O. (1995). Genetic Privacy. Journal of Law, Medicine & Ethics, 23(4), 320-330. https://doi.org/10.1111/j.1748-720X.1995.tb01374.x

Heemstra, H. E., van Weely, S., Büller, H. A., Leufkens, H. G., & de Vrueh, R. L. (2009). Translation of rare diseases research into orphan drug development: diseases matters. Drug Discovery Today, 14(23-24), 1166-1173. https://doi.org/10.1016/j.drudis.2009.09.008

Huyard, C. (2009). How did uncommon disorders become ‘rare diseases’? History of a boundary object. Sociology of Health & Illness, 31(4), 463-477. https://doi.org/10.1111/j.1467-9566.2008.01143.x

Law on the Prohibition of Discrimination in the Republic of Serbia (2009, March 30). Retrieved from http://ravnopravnost.gov.rs/en/legislation/republic-of-serbia-legislation/

Lerner, N. (2003). Group Rights and Discrimination in International Law (2nd ed.). The Hague: Kluwer Law International.

Levine, C., Faden, R., Grady, C., Hammerschmidt, D., Eckenwiler, L, & Sugarman, J. (2004). The Limitations of “Vulnerability” as a Protection for Human Research Participants. The American Journal of Bioethics, 4(3), 44-49. https://doi.org/10.1080/15265160490497083

Orphan Drug Act (1983, January 04). Retrieved from https://www.fda.gov/media/99546/download

Pachman, J. (2009). Evidence base for pre-employment medical screening. Bulletin of the World Health Organization. 87(7), 529-534. https://doi.org/10.2471/BLT.08.052605

Pasqualucci, J. M. (2008). Right to a Dignified Life (Vida Digna): The Integration of Economic and Social Rights with Civil and Political Rights in the Inter-American Human Rights System. Hastings International & Comparative Law Review, 31(1), 1. https://repository.uchastings.edu/cgi/viewcontent.cgi?article=1682&context=hastings_international_comparative_law_review

Rare Diseases Act of 2002 (2002, November 06). Retrieved from https://www.govinfo.gov/content/pkg/PLAW-107publ280/pdf/PLAW-107publ280.pdf

Rath, A., Olry, A., Dhombres, F., Miličić Brandt, M., Urbero, B., & Ayme, S. (2012). Representation of Rare Diseases in Health Information Systems: The Orphanet Approach to Serve a Wide Range of End Users. Human Mutation, 33(5), 803-808. https://doi.org/10.1002/humu.22078

Regulation (EC) 141/2000 of the European Parliament and of the Council on orphan medicinal products (1999, December 16). Retrieved from https://ec.europa.eu/health/sites/health/files/files/eudralex/vol-1/reg_2000_141_cons-2009-07/reg_2000_141_cons-2009-07_en.pdf

Rinaldi, A. (2005). Adopting an orphan, Incentives to develop drugs for rare disorders raise hopes and controversy. EMBO reports 6(6), 507-510. https://doi.org/10.1038/sj.embor.7400450

Robinson, P. R. (2012). Classification and coding of rare diseases: Overview of where we stand, rationale, why it matters and what it can change. Orphanet Journal of Rare Diseases, 7(Suppl 2), A10. https://doi.org/10.1186/1750-1172-7-S2-A10

Satterfield, T. A., Mertz, C. K., & Slovic, P. (2004). Discrimination, Vulnerability, and Justice in the Face of Risk. Risk Analysis, 24(1), 115-129. https://doi.org/10.1111/j.0272-4332.2004.00416.x

Serra, C., Rodriguez, M. C., Delclos, G. L., Plana, M., López, L G., & Benavides, F. G. (2007). Criteria and methods used for the assessment of fitness for work: a systematic review. Occupational and Environmental Medicine, 64(5), 304-312. https://doi.org/10.1136/oem.2006.029397

Shepherd, J. (1992). Preemployment examinations: How Useful? Journal of the American Board of Family Practice, 5(6), 617-621. https://doi.org/10.3122/jabfm.5.6.617

Sorgdrager B., Hulshof, C. T., & van Dijk, F. J. (2004). Evaluation of the effectiveness of pre-employment screening. International Archives of Occupational and Environmental Health, 77(4), 271-276. https://doi.org/10.1007/s00420-003-0492-z

Stein, M., & Lord, J. (2009). Future Prospects for the United Nations Convention on the Rights of Persons with Disabilities. In O. Mjöll Arnardóttir & G. Quinn (Eds.), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives. Leiden and Boston: Martinus Nijhof.

Trubek, D. M., & Trubek, L. G. (2005). Hard and Soft Law in the Construction of Social Europe: the Role of Open Method of Co-ordination. European Law Journal, 11(3), 343-364. https://doi.org/10.1111/j.1468-0386.2005.00263.x

Tushnet, M. (1992). Civil Rights and Social Rights: The Future of the Reconstruction Amendments. Loyola of Los Angeles Law Review, 25, 1207-1220. https://dash.harvard.edu/handle/1/13548427

Üstün, B., & Jakob, R. (2005). Calling a spade a spade: meaningful definitions of health conditions. Bulletin of the World Health Organization: the International Journal of Public Health, 83(11), 802. https://apps.who.int/iris/handle/10665/73464

World Health Organization. (2018). International Classification of Diseas-es (ICD-11). Retrieved from https://www.who.int/classifications/icd/en/

Young, K. G. (2008). The Minimum Core of Economic and Social Rights: A Concept in Search of Content. The Yale Journal of International Law, 33(1), 113-175. https://digitalcommons.law.yale.edu/yjil/vol33/iss1/4

Published
2020-08-27
How to Cite
Stojković Zlatanović, S., Sjeničić, M., & Sovilj, R. (2020). Labour rights of the rare diseases population ‒ breaking the glass ceiling. Stanovništvo, 58(2), 43-56. https://doi.org/10.2298/STNV200617005S
Section
Articles