Issue 1 (51) 2021

 

Perm University Herald. Juridical Sciences. 2021. Issue 1 (51)
Title: CONCEPTUAL FRAMEWORK FOR THE PROTECTION OF CIVIL RIGHTS IN THE FIELD OF REPROGENETICS
Authors:

E. E. Bogdanova, Kutafin Moscow State Law University (MSAL)

 This email address is being protected from spambots. You need JavaScript enabled to view it.
ORCID: 0000-0001-6181-9018
 ResearcherID: I-7586-2018
Articles of «Scopus» & «Web of Science»:       ---
Requisites: Bogdanova E.E. Kotseptual'nye osnovy zashhity sub"ektivnykh grazhdanskikh prav v sfere reprogenetiki [Conceptual Framework for the Protection of Civil Rights in the Field of Reprogenetics]. Vestnik Permskogo universiteta. Juridicheskie nauki – Perm University Herald. Juridical Sciences. 2021. Issue 51. Pp. 30–56. (In Russ.). DOI: 10.17072/1995-4190-2021-51-30-56
DOI: 10.17072/1995-4190-2021-51-30-56
Annotation:

Introduction: the paper deals with the problem of civil rights protection when using genomic technologies in the field of artificial human reproduction. Breakthrough advances in medical and biological science set the state an important task of developing an effective system of legal guarantees aimed at ensuring a fair balance of interests of the parties to the relevant relationship and third parties, protecting the rights and interests of an individual, preventing human biotechnological engineering for the purposes of eugenic practice, etc. According to the author, special attention should be paid to the problem of protecting the rights of the child when using genomic technologies, including preimplantation genetic testing. Purpose: to solve the problem of developing the conceptual foundations of civil rights protection under civil law when using genomic technologies in the field of artificial human reproduction,  which involves researching the grounds and peculiarities of applying methods of civil rights protection when using genomic technologies, in particular the technology of preimplantation genetic testing, which will make it possible to productively use these constructions; to create a uniform law enforcement practice in this area. Methods: general scientific, interdisciplinary methods common to the science of civil law and biomedicine (e.g. mathematical method, logical method) and methods specific to each of these sciences; logical, comparative legal, formal legal methods. Results: the author has studied the following: the available Russian and foreign regulatory framework and doctrinal sources on the protection of civil rights, especially the rights of the child, in the field of genomic technologies application; the implementation of the methods of protecting civil rights when using genomic technologies and, in particular, protecting the rights of the child, with attention focused on the specific features of the parties involved in legal relations in this area; the peculiarities of the legal nature of civil liability in the considered category of disputes. Conclusions: the paper provides conclusions reflecting the author's conceptual view of the problem of civil rights protection under civil law when using genomic technologies, in particular, the technology of preimplantation genetic testing. There were determined the directions for improving legislation in relation to persons born as a result of artificial reproduction with the use of genomic technologies; the limits of genomic technologies application in the field of reprogenetics and the conditions of liability in case of their violation were justified.
Keywords: biotechnology; genomic technologies; implantation genetic testing (PGT); genome editing; CRISPR / Cas9; genome; rights of citizens; methods of civil legal protection ; grounds for civil legal protection; legal capacity; human embryo; embryo selection; genetic information; claims from wrongful birth and wrongful life; parental authorityв
  download the full-version article
References: 1. Bogdanov D.E. Evolyutsiya grazhdansko-pravovoy otvetstvennosti s pozitsii spravedlivosti: sravnitel'no-pravovoy aspekt: monografiya [Evolution of Civil Liability from the Perspective of Justice: Comparative Legal Aspect: Monograph]. Moscow, 2015. 304 p. (In Russ.).
2. Bogdanova E.E. O pravakh na biomaterial cheloveka [On the Rights to Human Biomaterial]. Grazhdanskoe pravo – Civil Law. 2019. Issue 4. Pp. 28–32. (In Russ.).
3. Bogdanov E.V. Problema ob"ektivatsii cheloveka v prave [Problem of Human Objectification in Law]. Sovremennoe pravo – Modern Law. 2012. Issue 10. Pp. 41–46. (In Russ.).
4. Kobyakov D.P. Pravovoe regulirovanie transplantatsii organov i tkaney v Rossii [Legal Regulation of Organ and Tissue Transplantation in Russia]. Sovremennoe meditsinskoe pravo v Rossii i za rubezhom: Sb. nauch. tr. [Modern Medical Law in Russia and Abroad: Collection of Scientific Papers; ed. by O.L. Dubovik, Yu.S. Pivovarov]. Moscow, 2003. Pp. 283–289. (In Russ.).
5. Malein N.S. Vozmeshhenie vreda pri povrezhdenii zdorov'ya nesovershennoletnikh [Compensation of Damage to the Health of Minors]. Moscow, 1962. 66 р. (In Russ.).
6. Tarasova A.E. Pravosub"ektnost' grazhdan. Osobennosti pravosub"ektnosti nesovershennoletnikh, ikh proyavleniya v grazhdanskikh pravootnosheniyakh [Legal Personality of Citizens. Features of Legal Personality of Minors, Their Manifestation in Civil Relations]. Moscow, 2008. 356 p. (In Russ.).
7. Andrews J.B., Garcia C.R., Hodgen G.D., Jones H.W., McCormick R.A., Marrs R., Paulsen C.A., Robertson J., Wallach E.E., Walters L. Ethical Considerations of the New Reproductive Technologies. Fertility and Sterility. 1988. Vol. SUPPL.1. – 49. (In Eng.).
8. Baruch S., Kaufman D., Hudson K. Genetic Testing of Embryos: Practices and Perspectives of US IVF Clinics. Fertility and Sterility Fertility and Sterility. May 2008. Vol. 89 (5). Pp. 1053-1058. Available at: http://www.dnapolicy.org/resources/ PGDSurveyReportFertilityandSterilitySeptember2006withcoverpages.pdf. (In Eng.).
9. Benagiano G., Gianaroli L. The Italian Constitutional Court Modifies Italian Legislation on Assisted Reproduction Technology. Reproduction BioMedicine Online. 2010. Issue 20. Pp. 398-402. Available at: https://www.rbmojournal.com/ article/S1472-6483(09)00280-6/pdf. (In Eng.).
10. Bernstein H. Civil Liability for Pure Economic Loss Under American Tort Law. The American Journal of Comparative Law. 1998. Vol. 46. Pp. 111–133. (In Eng.).
11. Berg J. Owning Persons: The Application of Property Theory to Embryos and Fetuses. Wake Forest Law Review (Faculty Publications). 2005. Vol. 40. Pp. 159–217. Available at: http://ssrn. com/abstract=613903. (In Eng.).
12. Billauer B.P. Savior Siblings Protective Progeny, and Parental Determinism in the Age of CRISPR-Cas. 2020. P. 3. Available at: https://ssrn. com/abstract=3627576 or http://dx.doi.org/10. 2139/ssrn.3627576. (In Eng.).
13. Fordham B.A. Disability and Designer Babies. Valparaiso University Law Review. 2011. Vol. 45. P. 1473–1528. Available at: https://ssrn. com/abstract=1624310 or http://dx.doi.org/10. 2139/ssrn.1624310. (In Eng.).
14. Cohen I.G. Intentional Diminishment, the Non-Identity Problem, and Legal Liability. Hastings Law Journal. 2008. Vol. 60. Harvard Public Law Working Paper No. 09-11. Available at: https://ssrn.com/abstract=1330504. (In Eng.).
15. Crossley M. The Disability Kaleidoscope. Notre Dame Law Review. 1999. Issue 74. Pp. 645–678. (In Eng.).
16. Davis D. Genetic Dilemmas: Reproductive Technology, Parental Choice and Children's Futures. 2nd ed. Oxford University Press, 2009. 224 p. (In Eng.).
17. Efron Y., Lifshitz Aviram P. Conditional Parentage Is The New Eugenics. Child and Family Law Review. 2019. Pp. 1–37. Available at: https://ssrn.com/abstract=3472895. (In Eng.).
18. Giesen I. Of Wrongful Birth, Wrongful Life, Comparative Law and the Politics of Tort Law Systems. Tydskrif vir Heedendaagse Romeins-Hollandse Reg (THRHR). 2009. Vol. 72. Pp. 257–273. Available at: https://ssrn.com/ab¬stract=1424901. (In Eng.).
19. Habermas J. The Future of Human Nature. Reviewed by Joel Anderson Ethics. The University of Chicago Press. 2005. Vol. 115. Issue 4. Pp. 816–821. Available at: http://www.jstor.org/ stable/10.1086/430477. (In Eng.).
20. Henn W. Consumerism in Prenatal Diagnosis: A Challenge for Ethical Guidelines. Journal of Medical Ethics. December 2000. Vol. 26. Issue 6. Pp. 444–446. (In Eng.).
21. Hensel W.F. The Disabling Impact of Wrongful Birth and Wrongful Life Actions. Harvard Civil Rights-Civil Liberties Law Review. 2005. Vol. 40. P. 141–196. Available at: https://ssrn.com/abstract=932688. (In Eng.).
22. Hondius H. The Kelly Case – Compensation for Undue Damage for Wrongful Treatment. Health Law, Human Rights and the Biomedicine Convention. Essays in Honour of Henriette Roscam Abbing. 2005. Pp. 105–114. (In Eng.).
23. Horwitz M.J. The Transformation of American Law 1870-1960. 1992. 384 p. (In Eng.).
24. Huang P.H. Herd Behavior in Designer Genes. University of Pennsylvania Law School, Institute for Law and Economics, Working Paper No. 264. 1999. 38 p. Available at: https://ssrn.com/ abstract=170688 or http://dx.doi.org/10.2139/ ssrn.170688. (In Eng.).
25. Hunter J. Consent for the Legally Incompetent Organ Donor. Application of a Best-Interests Test. International Journal of Legal Medicine. 1991. Vol. 12. Issue 4. Pp. 535–557. (In Eng.).
26. Hunter J. Childress, The Gift of Life: Ethical Problems and Policies in Obtaining and Distributing Organs for Transplantation. Journal of Family Medicine and Primary Care. 1986. Vol. 13. Issue 2. Pp. 379–394. (In Eng.).
27. Kakourou G. The Clinical Utility of PGD with HLA Matching: a Collaborative Multi-Centre ESHRE Study. Human Reproduction. 2018. Issue 33. Pp. 520–530. (In Eng.).
28. Karpin I.A. Choosing Disability: Preimplantation Genetic Diagnosis and Negative Enhancement. Journal of Law and Medicine. 2007. Vol. 15. Issue 1. Pp. 89–103. (In Eng.).
29. Kelley P. J. Wrongful Life, Wrongful Birth, and Justice in Tort Law. Washington University Law Quarterly. 1979. Issue 4. Pp. 919–963. (In Eng.).
30. King J. S. Predicting Probability: Regulating the Future of Preimplantation Genetic Screening. Yale Journal of Health Policy, Law, and Ethics. 2008. Vol. 8. Issue 2. Pp. 283–358. Available at: https://ssrn.com/abstract=1284516. (In Eng.).
31. Mastenbroek S. In Vitro Fertilization with Preimplantation Genetic Screening. New England Journal of Medicine. 2007. Vol. 357. Issue 1. Pp. 9–17. (In Eng.).
32. Nerlich B., Clarke D. D., Johnson S. The First 'Designer Baby': The Role of Narratives, Cliches and Metaphors in the Year 2000 Media Debate. Science as Culture. 2003. Vol. 12. Issue 4. Pp. 471–498. (In Eng.).
33. Oliver M. The Politics of Disablement: A Sociological Approach. Oxford, 1990. 152 p. (In Eng.).
34. Perry R. The Economic Bias in Tort Law. University of Illinois Law Review. 2008. Vol. 2008. Pp. 1573–1622. Available at: https://ssrn.com/abstract=1162005. (In Eng.).
35. Ranscombe P. Creation of Designer Babies for Treatment is Lawful, Rule Lords. 2005. Available at: http://www.thescotsman.scotsman. com/index.cfm?id = 456522005. (In Eng.).
36. Rabin R. L. Tort Recovery for Negligently Inflicted Economic Loss: A Reassessment. Stanford Law Review. 1985. Vol. 37. Pp. 1513–1532. (In Eng.).
37. Rosato J. The Children of Art (Assisted Reproductive Technology): Should the Law Protect Them from Harm. Utah Law Review. 2004. Issue 57. Pp. 57–110. (In Eng.).
38. Sandel M. J. The Case Against Perfection: Ethics in the Age of Genetic Engineering. Journal of Clinical Investigation. 2007. Vol. 117. Issue 10. P. 2379. (In Eng.).
39. Sheldon S., Wilkinson S. Should Selecting Saviour Siblings be Banned? Journal of Medical Ethics. 2004. Vol. 30. Issue 6. Pp. 533–537. (In Eng.).
40. Silverstein E. On Recovery in Tort for Pure Economic Loss. University of Michigan Journal of Law Reform. 1999. Vol. 32. Pp. 403–439. Available at: https://repository.law.umich. edu/mjlr/vol32/iss3/2. (In Eng.).
41. Smolensky K. R. Creating Children with Disabilities: Parental Tort Liability for Preimplantation Genetic Interventions. Hastings Law Journal. 2008. Vol. 60. Issue 10. Pp. 299-346. (In Eng.).
42. Smolensky K. R. Parental Tort Liability for Direct Preimplantation Genetic Interventions: Technological Harms, the Social Model of Disability, and Questions of Identity. Arizona Legal Studies Discussion Paper No. 08-27. 2008. 17 p. Available at: http://ssrn.com/abstract=1295426. (In Eng.).
43. Snelling J., Henaghan M. Choosing Genes for Future Children: Chapter 5 – Law and Regulation. Human Genome Research Project. 2006. Available at: https://ssrn.com/abstract =1607444 or http://dx.doi.org/10.2139/ssrn. 1607444 (In Eng.).
44. Somervill M. Children's Human Rights to Natural Biological Origins and Family Structure. International Journal of the Family Law. 2010. Vol. 1. Issue 35. P. 35–54. (In Eng.).
45. Spriggs M. Lesbian Couple Create a Child Who Is Deaf Like Them. Journal of Medical Ethics. 2002. Vol. 28. Issue 5. P. 283. (In Eng.).
46. Terré F., SimplerP., Lequette Y. Droit Civil. Les Obligations. 6th ed. Paris: Dalloz, 1996. 905 p. (In Fr.).
47. Van Boom, Willem H. Pure Economic Loss - a Comparative Perspective. Pure Economic Loss; ed. by W.H. van Boom, H. Koziol, C. A. Witting. Vienna; New York: Springer, 2004. P. 5. Available at: https://ssrn.com/abstract=555809. (In Eng.). (In Eng.).
48. Van Gerven W. Tort Law. Common Law of Europe Casebooks. 2000. 1020 p. (In Eng.).
49. Verlinsky Y. Preimplantation Genetic Diagnosis Okay for Test-Tube Babies, Study Finds. SCIENCE DAILY. June 18, 2007. Available at: http://www.sciencedaily.com/releases/2007/06/070616191628.htm. (In Eng.).
50. Vranken M. Damages for 'Wrongful Birth' Where to after Cattanach? The University of Melbourne. Legal Studies Research Paper. 2004. Issue 89. Pp. 1–17. Available at: https://ssrn.com/ abstract=583601. (In Eng.).
51. Watson J. A Personal View of the Project. The Code of Codes: Scientific and Social Issues in the Human Genome Project; ed. by D. Kevles, L. Hood. 1992. (In Eng.).
52. Grody W. W., Thompson B. H., Gregg A. R., Bean L. H., Monaghan K. G. Schneider A., Lebo R. V. ACMG Position Statement on Prenatal/Preconception Expanded Carrier Screening. Genetics in Medicine. 2013. Vol. 15. Issue 6. Pp. 482–483. Available at: https://www.nature.com/ar¬ticles/gim201347. (In Eng.).
Received: 01.09.2020
Financing:

The reported study was funded by the Russian Foundation for Basic Research, project No. 18-29-14014 mk 'The concept of the civil legal protection of citizens’ rights when using genomic technologies'
The Perm State University
614068, Perm, street Bukireva, 15 (Faculty of Law), +7 (342) 2 396 275
vesturn@yandex.ru
ISSN 1995-4190 ISSN (eng.) 2618-8104
ISSN (online) 2658-7106
DOI 10.17072/1995-4190
(с) Editorial board, 2010
The magazine is registered in Federal Agency of supervision in sphere of communication and mass communications.
The certificate on registration of mass media ПИ № ФС77-33087 from September, 5th, 2008
The certificate on reregistration of mass media ПИ № ФС77-53189 from Marth, 14th, 2013

The magazine is included in List ВАК and in the Russian index of scientific citing

The founder & Publisher: the State educational institution of the higher training
“The Perm State University”.
Publishing 4 times a year