Right to be forgotten: European instruments to protect the rights of cancer survivors

Right to be forgotten: European instruments to protect the rights of cancer survivors

Authors

  • Gabriele Napoletano Department of Anatomical, Histological, Forensic and Orthopedic Sciences, “Sapienza” University of Rome, 00161 Rome, Italy
  • Lina De Paola Department of Anatomical, Histological, Forensic and Orthopedic Sciences, “Sapienza” University of Rome, 00161 Rome, Italy
  • Francesco Circosta Department of Clinical, Internal, Anesthesiological and Cardiovascular Sciences, "Sapienza" University of Rome, Rome, Italy.
  • Gianluca Montanari Vergallo Department of Anatomical, Histological, Forensic and Orthopedic Sciences, “Sapienza” University of Rome, 00161 Rome, Italy

Keywords:

Cancer survivors; cancer patient rights; right to be forgotten; discrimination; access to financial instruments; access to adoption; European laws; EU law.

Abstract

Background and aim: Cancer survivors, even many years after their illness, are often excluded or discriminated against in accessing funding, insurance contracts, child adoptions, and other aspects of social life. Methods: The authors conducted a search on the PubMed database using the keywords "cancer survivor" and "right to be forgotten," also drawing upon national and international legal, judicial and regulatory sources. The aim of the study is to analyze the scope of the phenomenon and identify suitable tools to counteract this discrimination. Results: Several European countries, including France, Belgium, Luxembourg, the Netherlands, Portugal, Romania, and Italy, have implemented laws specifically addressing the "right to be forgotten" for cancer survivors. This legal recognition stems from advancements in scientific research that have reduced cancer mortality and morbidity. These laws grant individuals the right not to disclose their past illness after a certain period of being disease-free, even during financial procedures or insurance applications. The European Union has encouraged other states to enact similar legislation to ensure uniform protection for cancer survivors. Conclusions: The regulations introduced by some European countries currently provide essential assistance to former patients to facilitate access to insurance and financial products otherwise unavailable. However, relying on the expectation that scientific research will produce increasingly strong evidence in this field, it is possible to envisage a future in which, regardless of regulations, the market itself will find these categories of people desirable to expand its sales channels.

Author Biography

Gianluca Montanari Vergallo, Department of Anatomical, Histological, Forensic and Orthopedic Sciences, “Sapienza” University of Rome, 00161 Rome, Italy

Associate Professor of Forensic Medicine, Department of Anatomical, Histological, Forensic and Orthopedic Sciences, “Sapienza” University of Rome, 00161 Rome, Italy

References

World Health Organization. International Agency for research on Cancer. Cancer Today. Absolute numbers, Incidence, Females, in 2022. Available online: https://gco.iarc.fr/today/en/dataviz/pie?mode=population&group_populations=0&sexes=2 (Accessed on 24th March 2024).

Botta L, Gatta G, Capocaccia R, et al. Long-term survival and cure fraction estimates for childhood cancer in Europe (EUROCARE-6): results from a population-based study. Lancet Oncol. 2022;23(12):1525-1536. doi:10.1016/S1470-2045(22)00637-4.

World Health Organization. International Agency for research on Cancer. Population Fact Sheets. Available online: https://gco.iarc.fr/today/en/fact-sheets-populations#countries (Accessed on 24th March 2024).

European Parliament. La lotta al cancro nell'UE: statistiche e azioni (infografiche). Updated on 17th February 2022. Available online: https://www.europarl.europa.eu/topics/it/article/20200131STO71517/la-lotta-al-cancro-nell-ue-statistiche-e-azioni-infografiche (Accessed on 24th March 2024).

The Lancet Haematology. Strengthening cancer care in Europe. Lancet Haematol. 2023 Jan;10(1):e1. doi: 10.1016/S2352-3026(22)00380-5.

Lagergren P, Schandl A, Aaronson NK, et al. Cancer survivorship: an integral part of Europe's research agenda. Mol Oncol. 2019 Mar;13(3):624-635. doi: 10.1002/1878-0261.12428.

National Cancer Registry Ireland (NCRI). 2021. “Cancer in Ireland 1994-2019: Annual Report of the National Cancer Registry. 2021 Annual Report.”

Ferlay J, Colombet M, Soerjomataram I, et al. Cancer incidence and mortality patterns in Europe: Estimates for 40 countries and 25 major cancers in 2018. Eur J Cancer. 2018 Nov;103:356-387. doi: 10.1016/j.ejca.2018.07.005.

Dyba T, Randi G, Bray F, et al. The European cancer burden in 2020: Incidence and mortality estimates for 40 countries and 25 major cancers. Eur J Cancer. 2021 Nov;157:308-347. doi: 10.1016/j.ejca.2021.07.039.

Irish Cancer Society. The Right to be Forgotten beyond cancer: Access to financial products and services. Issued in February 2022. Research conducted by Core Research, 2021 Available online: https://www.cancer.ie/sites/default/files/2022-02/Access%20to%20Financial%20products%20report%202022.pdf (Accessed on 24th March 2024).

Zaami S, Stark M, Signore F, Gullo G, Marinelli E. Fertility preservation in female cancer sufferers: (only) a moral obligation? Eur J Contracept Reprod Health Care. 2022 Aug;27(4):335-340. doi: 10.1080/13625187.2022.2045936.

Umani Ronchi F, Napoletano G. Uterus Transplantation and the redefinition of core bioethics precepts. Acta Biomed. 2021;92(5):e2021435. Published 2021 Nov 3. doi:10.23750/abm.v92i5.12257.

Varone MC, Napoletano G, Negro F. Decellularization and tissue engineering: viable therapeutic prospects for transplant patients and infertility? Eur Rev Med Pharmacol Sci. 2021 Oct;25(20):6164-6166. doi: 10.26355/eurrev_202110_26983.

Cucinella G, Gullo G, Catania E, et al. Stem Cells and Infertility: A Review of Clinical Applications and Legal Frameworks. J Pers Med. 2024;14(2):135. Published 2024 Jan 24. doi:10.3390/jpm14020135.

Zaami S, Marinelli E, di Luca NM, Montanari Vergallo G. Ethical and medico-legal remarks on uterus transplantation: may it solve uterine factor infertility? Eur Rev Med Pharmacol Sci. 2017 Nov;21(22):5290-5296. doi: 10.26355/eurrev_201711_13854.

Morena D, De Paola L, Ottaviani M, et al. Obstetric Violence in Italy: From Theoretical Premises to Court Judgments. Clin Ter. 2024;175(1):57-67. doi:10.7417/CT.2024.5034.

Firkins J, Hansen L, Driessnack M, Dieckmann N. Quality of life in "chronic" cancer survivors: a meta-analysis. J Cancer Surviv. 2020 Aug;14(4):504-517. doi: 10.1007/s11764-020-00869-9.

Leonardi F. The Definition of Health: Towards New Perspectives. Int J Health Serv. 2018 Oct;48(4):735-748. doi: 10.1177/0020731418782653.

Rallo G, Negro F, Consalvo F, Piersanti V, Marinelli S. Medically assisted procreation in times of COVID-19: what impact on health care system organization and the reproductive rights of couples? Acta Biomed. 2021 Nov 3;92(5):e2021275. doi: 10.23750/abm.v92i5.11900.

Marinelli S, Basile G, De Paola L, Napoletano G, Zaami S. Consequences of COVID-19 restrictions on adolescent mental health and drug abuse dynamics. Eur Rev Med Pharmacol Sci. 2024 Jan;28(2):836-851. doi: 10.26355/eurrev_202401_35085.

Marzorati C, Riva S, Pravettoni G. Who Is a Cancer Survivor? A Systematic Review of Published Definitions. J Cancer Educ. 2017 Jun;32(2):228-237. doi: 10.1007/s13187-016-0997-2.

Loi n° 2016-41 du 26 janvier 2016 de modernisation de notre système (The law No. 2016-41 of January 26, 2016 to modernize our health system). Available online: https://extranet.who.int/mindbank/item/6146 (Accessed on 16th April 2024).

Moniteur belge du 16 novembre 2022. Wetten, Decreten, Ordonnanties En Verordeningen. Lois, Decrets, Ordonnances Et Reglements. Available online: https://www.ejustice.just.fgov.be/mopdf/2022/11/17_1.pdf#Page6 (Accessed on 19th March 2024).

Ministry of Health of Luxembourg. Introduction au Luxembourg d'un droit à l'oubli pour personnes guéries d'un cancer. Available online: https://gouvernement.lu/fr/actualites/toutes_actualites/communiques/2019/10-octobre/29-schneider-droit-oubli.html (Accessed on 19th March 2024).

Staatsblad van het Koninkrijk der Nederlanden, 2020, 453. Available online: https://zoek.officielebekendmakingen.nl/stb-2020-415.pdf (Accessed on 19th March 2024).

Poças L, A Lei 75/2021 gennaio 2022, 127 ss, o direito ao esquecimento e os seguros. Available online: www.revistadedireitocomercial.com (Accessed on 19th March 2024).

Portal Legislativ, Lege nr. 200 din 7 iulie 2022 http://legislatie.just.ro/Public/DetaliiDocumentAfis/257381LEGE 200 07/07/2022 - Portal Legislativ (just.ro) (Accessed on 19th March 2024).

Scocca G, Meunier F. Towards an EU legislation on the right to be forgotten to access to financial services for cancer survivors. Eur J Cancer. 2022 Feb;162:133-137. doi: 10.1016/j.ejca.2021.12.001.

Bousquet PJ, Lafay L. Assurabilité et antécédents de cancer [Insurability and history of cancer]. Rev Prat. 2019 Apr;69(4):454-460.

Quarello P, Toss A, Mascarin M, et al. Get up, stand up: Alongside adolescents and young adults with cancer for their right to be forgotten. Tumori. 2022 Oct;108(5):402-406. doi: 10.1177/03008916221101652.

Das M. Italy to pass law on the right to be forgotten for cancer survivors. Lancet Oncol. 2023 Jul;24(7):e292. doi: 10.1016/S1470-2045(23)00296-6.

Gazzetta Ufficiale, legge 7 dicembre 2023, n. 193 Disposizioni per la prevenzione delle discriminazioni e la tutela dei diritti delle persone che sono state affette da malattie oncologiche. (23G00206). https://www.gazzettaufficiale.it/eli/id/2023/12/18/23G00206/sg#:~:text=848.,di%20cui%20alla%20presente%20legge

Paterlini M. Italy passes right to be forgotten for cancer survivors. Lancet. 2023 Aug 19;402(10402):599. doi: 10.1016/S0140-6736(23)01730-0.

Ferrari A, Quarello P, Mascarin M, et al. Italian pediatric and adult oncology communities join forces for a national project dedicated to adolescents and young adults with cancer. Tumori. 2022 Apr;108(2):104-110. doi: 10.1177/03008916211058790.

Burke H, Dunne S. "You nearly feel a little bit like you've less right to grieve": a qualitative study on the impact of cancer on adult siblings. J Cancer Surviv. 2023 Dec;17(6):1628-1638. doi: 10.1007/s11764-022-01295-9.

Official Journal of the European Union. Consolidated Version of the Treaty on The Functioning of the European Union. Issued on 26th October 2012. Available online: https://eur-lex.europa.eu/legal-content/IT/TXT/PDF/?uri=CELEX:12012E/TXT

Regolamento Generale sulla Protezione dei Dati. Regolamento (UE) 2016/679 del Parlamento europeo e del Consiglio del 27 aprile 2016. Available online: https://www.garanteprivacy.it/documents/10160/0/Regolamento+UE+2016+679.+Arricchito+con+riferimenti+ai+Considerando+Aggiornato+alle+rettifiche+pubblicate+sulla+Gazzetta+Ufficiale++dell%27Unione+europea+127+del+23+maggio+2018 (Accessed on 24th March 2024).

European Commission, Europe’s Beating Cancer Plan: One year on UCancerPlan https://health.ec.europa.eu/system/files/2022-02/ncd_ev_20220202_factsheet_en.pdf Beating Cancer Plan vii _https://health.ec.europa.eu/system/files/2022-02/eu_cancer-plan_en_0.pdf viii _

European Parliament resolution of 16 February 2022 on strengthening Europe in the fight against cancer – towards a comprehensive and coordinated strategy (2020/2267(INI)) https://www.europarl.europa.eu/doceo/document/TA-9-2022-0038_EN.html

Scocca G, Meunier F. A right to be forgotten for cancer survivors: A legal development expected to reflect the medical progress in the fight against cancer. J Cancer Policy 2020;25:2.

Lawler M, Meunier F. Don't make cancer survivors pay twice-the right for them to be "forgotten" should be law everywhere. BMJ. 2022 Sep 21;378:o2197. doi: 10.1136/bmj.o2197.

Dal Maso L, Panato C, Tavilla A, et al. Cancer cure for 32 cancer types: results from the EUROCARE-5 study. Int J Epidemiol. 2020 Oct 1;49(5):1517-1525. doi: 10.1093/ije/dyaa128.

Miller KD, Nogueira L, Devasia T, et al. Cancer treatment and survivorship statistics, 2022. CA Cancer J Clin. 2022 Sep;72(5):409-436. doi: 10.3322/caac.21731.

De Lorenzo F, Apostolidis K, Florindi F, Makaroff LE. Improving European policy to support cancer survivors. J Cancer Policy 2018; 15:72-75.

Downloads

Published

21-06-2024

Issue

Section

REVIEWS CLINICAL ARTICLES, UPDATES, FOCUS ON

How to Cite

1.
Napoletano G, De Paola L, Circosta F, Montanari Vergallo G. Right to be forgotten: European instruments to protect the rights of cancer survivors. Acta Biomed [Internet]. 2024 Jun. 21 [cited 2024 Jul. 25];95(3):e2024114. Available from: https://mattioli1885journals.com/index.php/actabiomedica/article/view/15877