Genetic Information in the Light of Genetic Discrimination: the Experience of Foreign States
https://doi.org/10.17803/lexgen-2022-1-1-56-62
Аннотация
Background. Genetic information is often used for purposes of discrimination. For example, the results of genetic testing can demonstrate a high risk of developing a disease in an apparently healthy person, which will require expensive medical care. Such information may affect the decision on the employment of a candidate for a job or the conditions for concluding an insurance contract with him/her. Objective. The article discusses major issues of legal regulation of public relations arising from protection against discrimination based on genetic status in the legislation and law enforcement practice of a number of foreign countries (Australia, Canada, the USA).
Design. 20 studies written in English were retrieved from Scopus and Web of Science databases.
Results. The research methodology is based on dialectical, logical, predictive methods, system analysis, content analysis, as well as private scientific methods (statistical, technical legal, comparative legal methods). The article provides an overview of the international legal framework for the regulation of public relations arising from countering discrimination based on genetic status, as well as key acts of leading foreign jurisdictions and law enforcement practice.
Conclusion. In conclusion, the author reflects on the advisability of implementing relevant foreign experience into the Russian legal system.
Список литературы
1. Adams, C., Donnelly, C. & Macdonald, A. (2015). The impact of known breast cancer polygenes on critical illness insurance. Scandinavian Actuarial Journal, 2015(2), 141–171. https://doi.org/10.1080/03461238.2013.794520
2. Chapman, C. R., Mehta, K. S., Parent, B. & Caplan, A. L. (2020). Genetic discrimination: Emerging ethical challenges in the context of advancing technology. Journal of Law and the Biosciences, 7(1). https://doi.org/10.1093/jlb/lsz016
3. Dupras, C., Song, L., Saulnier, K. M. & Joly, Y. (2018). Epigenetic discrimination: emerging applications of epigenetics pointing to the limitations of policies against genetic discrimination. Frontiers in Genetics, 9, 202, 1–6. https://doi.org/10.3389/fgene.2018.00202
4. Feldman, E. A. (2012). The Genetic Information Nondiscrimination Act (GINA): public policy and medical practice in the age of personalized medicine. Journal of General Internal Medicine, 27(6), 743–746. https://doi.org/10.1007/s11606-012-1988-6
5. Flynn, S., Cusack, G. & Wallen, G. R. (2019, February). Integrating genomics into oncology practice. Seminars in Oncology Nursing, 35(1), 116–130. https://doi.org/10.1016/j.soncn.2018.12.005
6. Gadzhiev, K. S. & Gusov, K. N. (2017). Discrimination. Bol'shaya Rossiiskaya Ehntsiklopediya [Big Russian Encyclopedia]. Available at: https://bigenc.ru/law/text/1958348. (Accessed 5.05.2021). (In Russ.).
7. Gammon, A. & Neklason, D. W. (2015). Confidentiality & the risk of genetic discrimination: What surgeons need to know. Surgical Oncology Clinics of North America, 24(4), 667. https://doi.org/10.1016/j.soc.2015.06.004
8. Gerards, J. H., Heringa, A. W. & Janssen, H. L. (2005). Genetic discrimination and genetic privacy in a comparative perspective. Vol. 51. Intersentia nv.
9. Hao, M., Macdonald, A. S., Tapadar, P. & Thomas, R. G. (2016). Insurance loss coverage under restricted risk classification: the case of iso-elastic demand. ASTIN Bulletin: The Journal of the IAA, 46(2), 265–291. https://doi.org/10.1017/asb.2016.6
10. Keogh, L. A. & Otlowski, M. F. (2013). Life insurance and genetic test results: a mutation carrier's fight to achieve full cover. Medical Journal of Australia, 199(5), 363–366. https://doi.org/10.5694/mja13.10202
11. Lemke, T. (2005). Beyond genetic discrimination. Problems and perspectives of a contested notion. Genomics, Society and Policy, 1(3), 1–19. https://doi.org/10.1186/1746-5354-1-3-22
12. Motoc, I. (2009). The international law of genetic discrimination: the power of ‘never again’. Oxford University Press.
13. Otlowski, M., Taylor, S. & Bombard, Y. (2012). Genetic discrimination: international perspectives. Annual Review of Genomics and Human Genetics, 13, 433–454. https://doi.org/10.1146/annurev-genom-090711-163800
14. Rothstein, M. A. (2018). GINA at ten and the future of genetic nondiscrimination law. Hastings Center Report, 48(3), 5–7. https://doi.org/10.1002/hast.847
15. Slaughter, L. M. (2008). The Genetic Information Nondiscrimination Act: why your personal genetics are still vulnerable to discrimination. Surgical Clinics of North America, 88(4), 723–738. https://doi.org/10.1016/j.suc.2008.04.004
16. Sorokina E. M. & Ponomareva, D. V. (2020). Indigenous Peoples’ Rights and Genomic Research in the United States: The Havasupai Case. International Legal Courier, (3–4), 40–45. (In Russ.).
17. Steck, M. B. & Hassen, E. (2019). Genetic nondiscrimination laws: What oncology nurses need to know. Seminars in Oncology Nursing, 35(1), 107–115. https://doi.org/10.1016/j.soncn.2018.12.004
18. Taylor, S., Treloar, S., Barlow‐Stewart, K., Stranger, M. & Otlowski, M. (2008). Investigating genetic discrimination in Australia: A large‐scale survey of clinical genetics clients. Clinical Genetics, 74(1), 20–30. https://doi.org/10.1111/j.1399-0004.2008.01016.x
19. Tiller, J., Otlowski, M. & Lacaze, P. (2017). Should Australia ban the use of genetic test results in life insurance? Frontiers in Public Health, 5, 330, 1–4. https://doi.org/10.3389/fpubh.2017.00330
20. Underhill-Blazey, M. & Klehm, M. R. (2020). Genetic Discrimination: The Genetic Information Nondiscrimination Act's impact on practice and research. Clinical Journal of Oncology Nursing, 24(2), 135–137. https://doi.org/10.1188/20.CJON.135-137
Рецензия
Для цитирования:
. Lex Genetica. 2022;1(1):56-62. https://doi.org/10.17803/lexgen-2022-1-1-56-62
For citation:
Ponomareva D.V. Genetic Information in the Light of Genetic Discrimination: the Experience of Foreign States. Lex Genetica. 2022;1(1):56-62. https://doi.org/10.17803/lexgen-2022-1-1-56-62
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