Donor anonymity: national legal regulation and international experience

Authors

DOI:

https://doi.org/10.26641/2307-0404.2020.3.214873

Keywords:

principle of anonymity, anatomical material transplantation, donor, recipient, confidential information

Abstract

The article is devoted to the analysis of legal, medical, moral and ethical aspects of the principle of donor anonymity. The principle of anonymity has a legal framework and appropriate regulation in international documents. These are: Directive on standards of quality and safety of human organs intended for transplantation, WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation, Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine and the Additional Protocol etc. This principle is the basis of the legislative regulation of donation in many countries, including Ukraine. The normative approaches to the legal regulation of donation and the principle of anonymity in accordance with national legislation are investigated. The Law of Ukraine "On the Application of Transplantation of Anatomical Materials to Man" bylaws and the application of the principle of anonymity depending on the type of donation: posthumous and lifetime are analyzed. The international experience of applying the principle of anonymity is characterized. The principle of absolute anonymity is enshrined, in particular, in the legislation of the Netherlands, Sweden. Accordingly, such regulatory approaches exclude any contact between the donor and the recipient. According to the principle of conditional anonymity (in particular, the United States and the United Kingdom), the exchange of information between the donor and the recipient is permitted, surely at the will. The advantages and disadvantages of direct communication between the donor and the recipient are described. The expediency of applying the principle of conditional anonymity in national practice is substantiated regarding moral, ethical, and psychological aspects. In order to implement this, it is proposed to consolidate the right of the donor and the recipient to approve or deny the data exchange at the legislative level. It is suggested to assign the appropriate functions aimed at facilitating the parties' interaction to the transplant coordinator.

Author Biographies

I. I. Shpuhanych

Ivan Franko National University of Lviv
LawFaculty
DepartmentofIntellectualProperty, InformationandCorporateLaw
S. Striltsiv str., 14, Lviv, 79000, Ukraine

K. Yu. Diukarieva-Berzhanina

Ivan Franko National University of Lviv
LawFaculty
DepartmentofIntellectualProperty, InformationandCorporateLaw
S. Striltsiv str., 14, Lviv, 79000, Ukraine

O. S. Yavorska

Ivan Franko National University of Lviv
LawFaculty
DepartmentofIntellectualProperty, InformationandCorporateLaw
S. Striltsiv str., 14, Lviv, 79000, Ukraine

References

[Additional Protocol to the Convention on Human Rights and Biomedicine concerning Transplantation of Organs and Tissues of Human Origin on January 24, 2002. N ETS N 186]. (2002). Ukrainian. Available from: https://zakon.rada.gov.ua/laws/show/994_684?lang=en

[WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation]. (May 17-21, 2010). Russian. Available from: https://www.who.int/transplantation/Guiding_PrinciplesTransplantation_WHA63.22ru.pdf?ua=1

[Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine]. (April 4, 1997). Ukrainian. Available from: https://zakon.rada.gov.ua/laws/show/994_334

[On the application of transplantation of ana­tomical materials to a human being: Law of Ukraine on May 17, 2018, No. 2427-VIII]. (2018). Ukrainian. Available from: https://zakon.rada.gov.ua/laws/show/2427-19

[On Information: Law of Ukraine on October 2, 1992, No. 2657-XII]. (1992). Ukrainian. Available from: https://zakon.rada.gov.ua/laws/show/2657-12

[On providing homotransplantat by living family donor for its transplantation: Order of the Ministry of Health of Ukraine on April 10, 2012, No. 250]. (2012). Ukrainian. Available from: https://zakon.rada.gov.ua/laws/main/z0963-12

[On standards of quality and safety of human organs intended for transplantation: Directive 2010/45/EU of the European Parliament and of the Council]. (July 7, 2010). Ukrainian. Available from: https://zakon.rada.gov.ua/laws/show/994_b38?lang=en/

Dicks S, et al. An exploration of the relationship between families of deceased organ donors and transplant recipients: A systematic review and qualitative synthesis. Health Psychology Open. 2018;5. doi: https://doi.org/10.1177/2055102918782172

Mamode N, Lennerling A, et al. Anonymity and live-donor transplantation: an ELPAT view. Transplantation. 2013;95:536-41. doi: https://doi.org/10.1097/TP.0b013e31827e31f7

Dempsey D, et al. Applications to statutory donor registers in Victoria, Australia: information sought and expectations of contact. Reproductive Biomedicine & Society Online. 2019;9:28-36. doi: https://doi.org/10.1016/j.rbms.2019.08.002

Azuri P, Tabak N, Kreitler S. Contact between deceased donors’ families and organ recipients. Progress in Transplantation. 2013;23(4):342-9. doi: https://doi.org/10.7182/pit2013708

Bolt S, Witjes M, Ende B. Restless Feelings: De­siring Direct Contact After Postmortem Organ Donation. OMEGA-Journal of Death and Dying; 2018. doi: https://doi.org/10.1177/0030222818800207

Bouras A. Organ Procurement and Social Networks: The End of Confidentiality? Science and engineering ethics. 2014;21(4). doi: https://doi.org/10.1007/s11948-014-9577-1

Gewarges M, Poole J, De Luca E, et al. Canadian Society of Transplantation members’ views on anonymity in organ donation and transplantation. Transplantation Proceedings. 2015;47(10):2799-804. doi: https://doi.org/10.1016/j.transproceed.2015.09.042

Slaats D, et al. Donor and Recipient Perspectives on Anonymity in Kidney Donation From Live Donors: A Mul-ticenter Survey Study. Am J Kidney Dis. 2018;71(1):52-64. doi: https://doi.org/10.1053/j.ajkd.2017.07.014

Larson S, Halimi J, Beals H. Supporting donation by encouraging correspondence between donor family members and transplant recipients. Transplantation. 2017;101:S44. doi: https://doi.org/10.1097/01.tp.0000525043.89149.fc

Mehakovic E, Bell A. Supporting transplant reci­pients’ correspondence to donor families. Transplant Journal of Australasia. 2015;24(2):26-29. Available from: https://search.informit.com.au/documentSummary;dn=441139724953616;res=IELHEA

Millbank J. Identity Disclosure and Information Sharing in Donor Conception Regimes: The Unfulfilled Potential of Voluntary Registers. International Journal of Law Policy and the Family. 2014;28(3):223-56. doi: https://doi.org/10.1093/lawfam/ebu008

Maple H, Chilcot J, Burnapp L, et al. Moti­vations, outcomes, and characteristics of unspecified (nondirected altruistic) kidney donors in the United Kingdom. Transplantation. 2014;98:1182. doi: https://doi.org/10.1097/TP.0000000000000340

Northam H. Increasing consent to organ donation by enabling donor families and recipients to meet. Donor Families Australia News. 2017;18:10. Available from: https://docs.wixstatic.com/ugd/8a154b_c40154f232ad4e1bb43c525f3c4de9ae.pdf

Annema C, et al. Opinions of Dutch Liver Trans­plant Recipients on Anonymity of Organ Donation and Direct Contact With the Donors Family. Transplantation. 2014;99(4). d0i: https://doi.org/10.1097/TP.0000000000000394

Poole J. Donor Family and Recipient Anonymity: Time for Change. The Journal of Heart and Lung Transplantation. 2019;38(4):S92-3. doi: https://doi.org/10.1016/j.healun.2019.01.214

Post M. What matters and what doesn’t: Organ, eye and tissue donor families, grief support and recipient communication. Grief Matters: The Australian Journal of Grief and Bereavement. 2015;18(1):18-22. Available from: https://search.informit.com.au/documentSummary;dn=301541504287182;res=IELHEA

Pronk M, Slaats D, et al. Toward a conditional approach to anonymity? An explorative multicenter longitudinal study among anonymous living kidney donors and recipients. Transpl Int. 2017;30:1243-52. doi: https://doi.org/10.1111/tri.13016

Published

2020-10-05

How to Cite

1.
Shpuhanych II, Diukarieva-Berzhanina KY, Yavorska OS. Donor anonymity: national legal regulation and international experience. Med. perspekt. [Internet]. 2020Oct.5 [cited 2024Nov.23];25(3):198-204. Available from: https://journals.uran.ua/index.php/2307-0404/article/view/214873

Issue

Section

SOCIAL MEDICINE