Protecting cancer survivors from financial discrimination throughout the EU: A cross-European perspective.

This article provides an overview of the High-Level Conference on Ending Financial Discrimination Against Cancer Survivors held on the 15th of February 2024, in Brussels, Belgium. Organised under the auspices of the Belgian Presidency of the European Council and led by the European Initiative on Ending Discrimination Against Cancer Survivors, the focus was the "right to be forgotten" (RTBF), which seeks to prevent financial discrimination against former cancer patients by ensuring their medical history is not considered by insurers and lenders 5 years after the end of treatment and without recurrence of the disease. Through detailed discussions and poignant testimonies, the conference shed light on the profound impact of financial discrimination on cancer survivors' lives and the moral and legal imperatives to address it. The article concludes with recommendations for advancing RTBF legislation at both national and European levels, emphasising the importance of political will, medical research, and strong advocacy from the cancer community.

Cancer Cure and Consequences on Survivorship Care: Position Paper from the Italian Alliance Against Cancer (ACC) Survivorship Care Working Group.

A multidisciplinary panel of experts and cancer patients developed a position paper to highlight recent evidence on "cancer cure" (ie, the possibility of achieving the same life expectancy as the general population) and discuss the consequences of this concept on follow-up and rehabilitation strategies. The aim is to inform clinicians, patients, and health-care policy makers about strategies of survivorship care for cured cancer patients and consequences impacting patient lives, spurring public health authorities and research organizations to implement resources to the purpose. Two identifiable, measurable, and reproducible indicators of cancer cure are presented. Cure fraction (CF) is >60% for breast and prostate cancer patients, >50% for colorectal cancer patients, and >70% for patients with melanoma, Hodgkin lymphoma, and cancers of corpus uteri, testis (>90%), and thyroid. CF was >65% for patients diagnosed at ages 15-44 years and 30% for those aged 65-74 years. Time-to-cure was consistently <1 year for thyroid and testicular cancer patients and <10 years for patients with colorectal and cervical cancers, melanoma, and Hodgkin lymphoma. The working group agrees that the evidence allows risk stratification of cancer patients and implementation of personalized care models for timely diagnosis, as well as treatment of possible cancer relapses or related long-term complications, and preventive measures aimed at maintaining health status of cured patients. These aspects should be integrated to produce an appropriate follow-up program and survivorship care plan(s), avoiding stigma and supporting return to work, to a reproductive life, and full rehabilitation. The "right to be forgotten" law, adopted to date only in a few European countries, may contribute to these efforts for cured patients.

Get up, stand up: Alongside adolescents and young adults with cancer for their right to be forgotten.

Adolescent and young adult cancer survivors may experience various forms of social difficulties years or even decades after completing their cancer treatments. This article will hopefully help the Italian national project dedicated to adolescents and young adults with cancer promoting political and legal solutions to stop discrimination and supporting the right to be forgotten.

Towards an EU legislation on the right to be forgotten to access to financial services for cancer survivors.

INTRODUCTION: Financial discrimination may affect an increasing number of cancer survivors in Europe as a consequence of the improvement of cancer management. According to the latest projections, Europe counts around 20 million cancer survivors. In the few years, the issue raised the attention of the European policymakers. OBJECTIVES: The goal of this study is to promote political and legal solutions taking into consideration the need to stop discrimination against cancer survivors. The article also aims to implement legal principles on patients' rights and social values at the national and European levels, emphasising EU competence on the matter. METHODS: The article reviews the current legal aspects concerning the right to be forgotten (RTBF) for cancer survivors in Europe, and it analyses the EU competency for its implementation. RESULTS: The legislative initiatives in force in France, Belgium, Luxembourg, the Netherlands, and Portugal provide concrete examples of an effective solution for former patients that should be extended throughout the EU. Under these circumstances, the European Legislator could lead on multiple initiatives to implement at the European level the RTBF, as our research has demonstrated the EU competency for these matters. CONCLUSION: A Pan-European solution based on the implementation of the RTBF is feasible within current treaties and seems the best approach to tackle the issue. The EU Action would provide a common and harmonised regulatory framework among the Member States to avoid discrimination and ensure equality among EU citizens being cured of cancer.

Could You Ever Forget Me? Why People Want to be Forgotten Online.

The concept of people's memory maintains the finiteness of time and capacity. However, with the advancement in technology, the amount of storage memory a person can use has increased dramatically. Given that digital traces can hardly be erased or forgotten, individuals have begun to express their desire to be forgotten in the digital world, and governments and academia are considering methods to fulfill such wishes. Capturing the difficulties in terms of a cultural lag between technological advancements and regulations on individuals' data privacy needs, we identify six motives for individuals wishing to be forgotten online and investigate its expected effects on online content generation through a qualitative content analysis of 222 responses from open-ended surveys in Korea. Our findings provide implications for the literature on individual privacy and the right to be forgotten employing the cultural lag, as well as, elaborate further on the relationship between being forgotten online and the legitimacy of such requests of individuals. Additionally, implications for data providers, data controllers/processors, and governments to address this lag and build a balanced system of personal information are provided.

The right to be forgotten and COVID-19: privacy versus public interest / El derecho al olvido y el COVID-19: privacidad frente a interés público / O direito ao esquecimento e COVID-19: privacidade versus interesse público

Abstract: Recent studies highlight the importance of digital surveillance to gather individual health information due to the global pandemic caused by the new COVID-19 disease. This paper analyses its legal and ethical implications at the interface between the individual right to privacy and the collective interests of public health. We framed the discussion in law, deontology and utilitarianism. The lasted theories and human rights, especially privacy, are crucial in our argument. Health-derived dilemmas and efforts to solve them, especially by information technologies, bioethics and law, exist at these perspectives' interface. In particular, we analysed the intersection between autonomy, the right to privacy, and the so-called 'right to be forgotten' in the public health context. In other words, we studied the right to obtain from the controller the erasure of health data - a radical means of control over personal data established in Article 17 of the General Data Protection Regulation (GDPR). Given the lack of specifics regarding collection and re-use of such data under the broad scope of public health purposes, implied consent does not address the issue of proportionality. We highlight legal safeguards' insufficiency, suggesting applying the 'right to be forgotten' according to an ethical interpretation.

Resumen: Estudios recientes destacan la importancia de la vigilancia digital para recoger información sanitaria individual debido a la pandemia mundial causada por la nueva enfermedad COVID-19. Este artículo analiza sus implicaciones legales y éticas en la interfaz entre el derecho individual a la privacidad y los intereses colectivos de la salud pública. Enmarcamos la discusión en el derecho, la deontología y el utilitarismo. Estas últimas teorías y los derechos humanos, especialmente la privacidad, son cruciales en nuestro argumento. Los dilemas relacionados con la salud y los esfuerzos por resolverlos, especialmente a través de la tecnología de la información, la bioética y el derecho, se encuentran en la interfaz de estas perspectivas. En particular, analizamos la intersección entre la autonomía, el derecho a la privacidad y el llamado "derecho al olvido" en el contexto de la salud pública. Es decir, estudiamos el derecho a obtener del responsable del tratamiento la supresión de los datos de salud, un medio radical de control sobre los datos personales establecido en el artículo 17 del Reglamento general de protección de datos (RGPD). Dada la falta de especificidades en cuanto a la recogida y reutilización de dichos datos dentro del amplio ámbito de los objetivos de salud pública, el consentimiento implícito no aborda la cuestión de la proporcionalidad. Destacamos la insuficiencia de las garantías legales, sugiriendo la aplicación del "derecho al olvido" según una interpretación ética.

Resumo: Estudos recentes salientam a importância da vigilância digital para recolher informações individuais de saúde devido à pandemia global causada pela nova doença COVID-19. Este artigo analisa as suas implicações legais e éticas na interface entre o direito individual à privacidade e os interesses coletivos da saúde pública. Enquadramos a discussão no direito, na deontologia e no utilitarismo. As últimas teorias e os direitos humanos, especialmente a privacidade, são cruciais na nossa argumentação. Dilemas derivados da saúde e esforços para os resolver, especialmente através das tecnologias da informação, da bioética e do direito, existem na interface destas perspetivas. Em particular, analisámos a intersecção entre autonomia, direito à privacidade, e o chamado "direito ao esquecimento" no contexto da saúde pública. Por outras palavras, estudámos o direito de obter do responsável pelo tratamento o apagamento dos dados de saúde, um meio radical de controlo dos dados pessoais estabelecido no artigo 17º do Regulamento Geral de Proteção de Dados (RGPD). Dada a falta de especificidades em relação à recolha e reutilização de tais dados no âmbito alargado dos objetivos de saúde pública, o consentimento implícito não aborda a questão da proporcionalidade. Destacamos a insuficiência de salvaguardas jurídicas, sugerindo a aplicação do "direito ao esquecimento" de acordo com uma interpretação ética.

The right to be forgotten versus the right to disclosure of gamete donors' id: ethical and legal considerations / El derecho al olvido frente al derecho a revelar la identificación de los donantes de gametos: consideraciones éticas y jurídicas / O direito ao esquecimento versus o direito à divulgação da identificação de dadores de gâmetas: considerações éticas e legais

Abstract: 15. The anonymity of gamete donors in the context of medically-assisted reproduction techniques (ART) and the right of the offspring to know their genetic or biological parents' identity is a controversial and widely debated topic in the scientific literature. The positions on the issue in each country are different. Sometimes they are in opposition to each other even in countries with strong similarities, such as those in the European Union (EU), in the framework of shared ethical values. Although some countries still enshrine the rule of anonymity, there is an undeniable tendency to guarantee the right to know one's origins by creating relevant exceptions or abolishing donor anonymity status altogether. 16. This article offers ethical and legal considerations of whether the so-called 'right to be forgotten' (RTBF) could be extended to include gamete donors' right to remain anonymous. This perspective goes against the general trend, certainly in Europe, of recognizing that offspring born from donor gametes have a right to access information relating to their genetic progenitors. The novel addition is to question whether the General Data Protection Regulation (GDPR) might provide fertile ground for questioning this approach, and effectively support those jurisdictions where anonymity is still possible.

Resumen: 20. El anonimato de los donantes de gametos en el contexto de las técnicas de reproducción médicamente asistida (RM) y el derecho de la descendencia a conocer su identidad genética o biológica es un tema controvertido y ampliamente debatido en la literatura científica. Las posiciones sobre el tema en cada país son diferentes. A veces se oponen entre sí, incluso en países con fuertes similitudes, como los de la Unión Europea (UE), en el marco de valores éticos compartidos. Aunque algunos países siguen consagrando la norma del anonimato, es innegable la tendencia a garantizar el derecho a conocer el propio origen creando las excepciones pertinentes o suprimiendo por completo el estatus de anonimato del donante. 21. Este artículo ofrece consideraciones éticas y jurídicas sobre si el llamado "derecho al olvido" podría ampliarse para incluir el derecho de los donantes de gametos a permanecer en el anonimato. Esta opinión es contraria a la tendencia general, ciertamente en Europa, de reconocer que los hijos nacidos de gametos donados tienen derecho a acceder a la información relativa a sus padres genéticos. La nueva adición consiste en debatir si el Reglamento general de protección de datos (RGPD) podría proporcionar un terreno fértil para cuestionar este enfoque y apoyar efectivamente a las jurisdicciones en las que el anonimato sigue siendo posible.

Resumo 25. O anonimato dos dadores de gâmetas no contexto das técnicas de reprodução medicamente assistida (RMA) e o direito da descendência a conhecer a sua identidade genética ou biológica é um tema controverso e amplamente debatido na literatura científica. As posições sobre a questão em cada país são diferentes. Por vezes estão em oposição umas às outras, mesmo em países com fortes semelhanças, como os da União Europeia (UE), no quadro de valores éticos partilhados. Embora alguns países ainda consagrem a regra do anonimato, existe uma tendência inegável para garantir o direito de conhecer as suas origens, criando exceções relevantes ou abolindo completamente o estatuto de anonimato dos dadores. 26. Este artigo oferece considerações éticas e legais sobre se o chamado "direito ao esquecimento" poderia ser alargado para incluir o direito dos dadores de gâmetas a permanecerem anónimos. Esta perspetiva vai contra a tendência geral, certamente na Europa, de reconhecer que os descendentes nascidos de gâmetas doadas têm o direito de aceder à informação relacionada com os seus progenitores genéticos. O novo aditamento é debater se o Regulamento Geral de Proteção de Dados (RGPD) poderá fornecer um terreno fértil para questionar esta abordagem, e apoiar efetivamente as jurisdições onde o anonimato ainda é possível.

Gender Transition: Is There a Right to Be Forgotten?

The European Union (EU) faced high risks from personal data proliferation to individuals' privacy. Legislation has emerged that seeks to articulate all interests at stake, balancing the need for data flow from EU countries with protecting personal data: the General Data Protection Regulation. One of the mechanisms established by this new law to strengthen the individual's control over their data is the so-called "right to be forgotten", the right to obtain from the controller the erasure of records. In gender transition, this right represents a powerful form of control over personal data, especially health data that may reveal a gender with which they do not identify and reject. Therefore, it is pertinent to discern whether the right to have personal data deleted-in particular, health data-is ethically acceptable in gender transition. Towards addressing the ethical dimensions of the right to be forgotten in this case, this study presents relevant concepts, briefly outlines history, ethics and law of records considering the evolution from paper to electronic format, the main aspects of identity construction and gender identity, and explores the relationship between privacy, data protection/information control and identity projection. Also, it discusses in gender transition the relation between "the right to self-determination", "the right to delete", and "the right to identity and individuality". Conclusions on the ethical admissibility of the 'right to be forgotten' to control gender-affirming information are presented.

Modeling excess hazard with time-to-cure as a parameter.

Cure models have been widely developed to estimate the cure fraction when some subjects never experience the event of interest. However, these models were rarely focused on the estimation of the time-to-cure, that is, the delay elapsed between the diagnosis and "the time from which cure is reached," an important indicator, for instance, to address the question of access to insurance or loans for subjects with personal history of cancer. We propose a new excess hazard regression model that includes the time-to-cure as a covariate-dependent parameter to be estimated. The model is written similarly to a Beta probability distribution function and is shown to be a particular case of the non-mixture cure models. Parameters are estimated through a maximum likelihood approach and simulation studies demonstrate good performance of the model. Illustrative applications to three cancer data sets are provided and some limitations as well as possible extensions of the model are discussed. The proposed model offers a simple and comprehensive way to estimate more accurately the time-to-cure.