A right to be forgotten for cancer survivors: A legal development expected to reflect the medical progress in the fight against cancer

Scocca, Grazia; Meunier, Françoise

doi:10.1016/j.jcpo.2020.100246

Cited by 20 publications

(15 citation statements)

References 5 publications

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“…patient alliances) and regulators that current policies need to be amended to mitigate the risk of discrimination for cancer patients in the insurance domain. For example, the European Cancer Patient Coalition has advocated the view that, once the cure of cancer is declared, survivors should have the right to live their lives without being discriminated for their cancer history [ 59 ]. Irrespective, of how they are doing, compared to other people of similar age and socio-demographic characteristics with no cancer history.…”

Section: Discussionmentioning

confidence: 99%

“…In recent years, this shift of perspective has gained momentum among policy makers in several European countries. In 2016, France first introduced the “Right to be forgotten” law, which grants cancer survivors the legal right not to disclose their cancer diagnosis to insurers after a period of 10 years after end of treatment, or for cancers occurring before the age of 18 years, or 5 years after end of treatment [ 59 , 60 ]. With the implementation of the European Union’s General Data Protection Regulation (GDPR), the right to be forgotten has been enshrined in federal data protection regulation, enabling individuals to request the deletion or removal of specific personal data (including health data) where there is no compelling reason for its continued processing (Art.…”

Section: Discussionmentioning

confidence: 99%

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The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer

Hendriks

Harju

Roser

et al. 2021

BMC Health Serv Res

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Background The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades. However, insurance hardships of survivors are mostly unknown. This study explored qualitatively, in a sample of childhood cancer survivors (CCS), (i) the experiences and needs of CCS living in Switzerland with a special focus on hardships related to insurance; and (ii) the views of insurance and law experts with experience on childhood cancer. Methods Semi-structured interviews were conducted with 28 childhood cancer survivors and 3 experts (one legal expert, two insurance experts). Data was analysed using qualitative content analysis. Results Three key themes emerged from the interviews with the CCS: 1) experiences with insurance, 2) perception of discrimination, and 3) needs and barriers for support. The interviewed experts provided further detailed clarification of CCS’ concerns. Our findings indicated that some CCS can move past their cancer history, while others continue to face hardships. CCS reported confusion about the opportunities and services within the social security system and most relied on their personal contacts for guidance. Finally, CCS expressed a strong need for socio-economic and legal support for social insurance questions, especially related to disability insurance. Conclusions With the growing population of CCS, it is essential to further assess the interplay between medical and psychosocial health and socio-economic hardship. Supportive psychosocial services should aim to ameliorate insurance hardships. Better understanding of the relationship between childhood cancer and insurance hardships during survivorship will inform efforts to improve long-term financial security and health outcomes for survivors. We call for the public, lawmakers, researchers, insurers, and patient organizations to come together and discuss future perspectives to avoid the risk of discrimination for cancer survivors.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer

Hendriks

Harju

Roser

et al. 2021

BMC Health Serv Res

View full text Add to dashboard Cite

show abstract

“…Recommended solution 3.2: Evaluate the adoption of legal provisions that have a key role in promoting reintegration, equality and social inclusion and the Right to Be Forgotten for all age groups [16,17]. Ensure that the Right to be Forgotten is adopted across all European countries and jurisdictions.…”

Section: Enhancing Cancer Survivorship Through Research and Innovationmentioning

confidence: 99%

Challenges and solutions to embed cancer survivorship research and innovation within the EU Cancer Mission

et al. 2021

Self Cite

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We have reached a watershed moment in Europe in our efforts to ensure increased survival and better outcomes for cancer patients. The EU Cancer Mission and the European Beating Cancer Plan together, provide an unrivalled opportunity to make significant inroads into a disease that kills over 1.7 million European citizens annually.Harnessing these twin pillars of cancer research and cancer control can be transformative for the European cancer community, and in particular for the European cancer patient. However, from a research perspective, in order to fully realise these benefits, we need to ensure that all aspects of the cancer continuum are addressed.Previous research efforts have focussed more on the diagnosis and treatment of cancer, whereas cancer survivorship, to date, has been overlooked. Here, we aim to redress this balance, by identifying the key challenges in cancer survivorship research that need to be addressed and proposing a series of recommended solutions, which, if acted upon, would deliver significant benefits for the nearly 14 million cancer survivors in Europe. To achieve this, we propose the development of a clearly articulated and sustainably funded European Cancer Survivorship Research and Innovation Plan. Embedding this plan within the framework of the EU Cancer Mission would be transformative for cancer survivors and society.

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“…patient alliances) and regulators that current policies need to be amended to mitigate the risk of discrimination for cancer patients in the insurance domain. For example, the European Cancer Patient Coalition has advocated the view that, once the cure of cancer is declared, survivors should have the right to live their lives without being discriminated for their cancer history [58]. Irrespective, of how they are doing, compared to other people of similar age and socio-demographic characteristics with no cancer history.…”

Section: The Right To Be Forgottenmentioning

confidence: 99%

“…In recent years, this shift of perspective has gained momentum among policy makers in several European countries. In 2016, France rst introduced the "Right to be forgotten" law, which grants cancer survivors the legal right not to disclose their cancer diagnosis to insurers after a period of 10 years after end of treatment, or for cancers occurring before the age of 18 years, or 5 years after end of treatment [58,59]. With the implementation of the European Union's General Data Protection Regulation (GDPR), the right to be forgotten has been enshrined in federal data protection regulation, enabling individuals to request the deletion or removal of speci c personal data (including health data) where there is no compelling reason for its continued processing (Art.…”

Section: The Right To Be Forgottenmentioning

confidence: 99%

The long shadow of childhood cancer: A qualitative study on insurance hardship among survivors of childhood cancer

Hendriks

Harju

Roser

et al. 2020

Preprint

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Background The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades. However, insurance hardships of survivors and their families are mostly unknown. This study explored qualitatively, in a sample of childhood cancer survivors (CCS), (i) the experiences and needs of CCS living in Switzerland with a special focus on hardships related to insurance; and (ii) the views of insurance and law experts with experience on childhood cancer. Methods Semi-structured interviews were conducted with 28 childhood cancer survivors and 3 experts (one legal expert, two insurance experts). Data was analysed using qualitative content analysis. Results Three key themes emerged from the interviews with the CCS: 1) experiences with insurance, 2) perception of discrimination, and 3) needs and barriers for support. The interviewed experts provided further detailed clarification of CCS’ concerns. Our findings indicated that some CCS can move past their cancer history, while others continue to face hardships. CCS reported confusion about the opportunities and services within the social security system and most relied on their personal contacts for guidance. Finally, CCS expressed a strong need for socio-economic and legal support for social insurance questions, especially related to disability insurance. Conclusions With the growing population of CCS, it is essential to further assess the interplay between medical and psychosocial health and socio-economic hardship. Supportive psychosocial services should aim to ameliorate insurance hardships. Better understanding of the relationship between childhood cancer and insurance hardships during survivorship will inform efforts to improve long-term financial security and health outcomes for survivors. We call for the public, lawmakers, researchers, insurers, and patient organizations to come together and discuss future perspectives to avoid the risk of discrimination for cancer survivors.

show abstract

A right to be forgotten for cancer survivors: A legal development expected to reflect the medical progress in the fight against cancer

Cited by 20 publications

References 5 publications

The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer

The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer

Challenges and solutions to embed cancer survivorship research and innovation within the EU Cancer Mission

The long shadow of childhood cancer: A qualitative study on insurance hardship among survivors of childhood cancer

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