INITIATIVES AT THE EU

This page presents the different initiatives being led at the European Union that have integrated the right to be forgotten with the aim of ending discrimination against cancer survivors.

Beating Cancer Plan

The right to be forgotten has been named as one of the European Commission’s priorities in the Beating Cancer Plan.

It is mentioned as part of the objective of improving the quality of life for cancer patients, survivors, and carers. It was acknowledged that numerous cancer survivors in long-term remission find themselves receiving unfair access to financial services.

The European Commission is currently working on a Code of Conduct.

European Parliament

In February 2022, the European Parliament adopted on proposals on ways to strengthen the role of the European Union in the fight against cancer, as a response to the Commission’s Beating Cancer Plan. The need to end financial discrimination against cancer survivors through the right to be forgotten was one of the key recommendations of Members of the EP. The Parliament called on Member States to implement national legislation to ensure equal access to financial services to cancer survivors.

The support received from the European Parliament as regards the need to protect all European cancer survivors continued when developing a report on the Commission’s proposal on Consumer Credits Directive. The provisions related to the right to be forgotten were included in the report of MEP Kateřina Konečna.

Following months of interinstitutional negotiations, on 2 December 2022, a provisional agreement on new measures in the context of the Proposal for a Directive on Consumer Credits. This agreement includes, as quoted by RTBF supporter and rapporteur on the file, Kateřina Konečná, “for the first time in history, (…) the guarantee of the right to be forgotten for cancer patients in EU legislation”.

Political Declaration

The Trio Presidency of France, the Czech Republic and Sweden, through their Political Declaration, included a very important Action (Action 24), which articulates the commitment to achieve an EU-wide Right to be Forgotten. The Trio Presidency also proposed to establish a network for the implementation of the Right to be Forgotten for cancer survivors, involving the 5 Member States where this crucial provision has already entered into force.

EU Mission on Cancer

The European Commission has committed to the Right to be Forgotten through both the Beating Cancer Plan and the Mission Board for Cancer. These initiatives represent a tremendous step in the right direction for cancer survivors in Europe. Through the activities of organisations, such as the European Academy of Cancer Sciences (EACS), The European Cancer patient Coalition (ECPC) and the European Cancer Organisation (ECO) proposals, the Mission Board for Cancer’s report specifically includes consideration for research on survivorship.

In the Report of the Mission Board for Cancer, the experts suggested tackling the right to be forgotten through:

Recommendation 7: Developing an EU-wide research programme and policy support to improve the quality of life of cancer patients and survivors, family members and carers, and all persons with an increased risk of cancer
Recommendation 8: Create a European Cancer Patient Digital Centre where cancer patients and survivors can deposit and share their data for personalized care
Recommendation 9: Achieve Cancer Health Equity in the EU across the continuum of the disease

Consumer Credit Directive

In 2021, the European Commission submitted a revision proposal. It states that “Personal data, such as personal data found on social media platforms or health data, including cancer data, should not be used when conducting a creditworthiness assessment” (Paragraph 47).

Based on this text, negotiators from the Parliament and the Council reached a provisional agreement in December 2022 which includes a measure that protects cancer survivors applying for credit for which insurance is required, whereby they have the “right to be forgotten” after a relevant period of time so their former illness does affect the insurance rates (art. 14).

MEP Kateřina Konečná (The Left, CZ) was instrumental in getting the right to be forgotten included in the provisional text. She declared: “In this time of economic crisis, we have prepared legislation that will really protect consumers in the field of consumer credit. For the first time in history, we managed to enforce the guarantee of the right to be forgotten for cancer patients in EU legislation.”

The text was approved by the European Parliament on 12 September 2023. It states:

(41a) Because of their medical history, many cancer survivors in long-term remission often experience an unfair treatment in accessing to financial services. They often face prohibitively high premiums, although they have been cured for many years, even decades. For the purpose of giving consumers who survived cancer equal access to insurance related to credit agreements, Member States should require that the insurance policies are not based on health data of consumers after a relevant period of time following the end of the consumer’s medical treatment. Such period of time determined by the Member States may not exceed a period of 15 years counting from the end of the medical treatment of the consumer.

and

(47) The assessment of creditworthiness should be based on information on the financial and economic situation, (…) That information (…) should not include special categories of personal data referred to in Article 9(1) of Regulation (EU)
2016/679, such as health data including cancer data, nor information obtained from social networks.

The Consumer Credit Directive entered into force on 19 November 2023. Member States will then have two years to transpose it into national legislation in the way they see fit, and one additional year to implement it.

While this is a step in the right direction in protecting cancer survivors from financial discrimination, this remains insufficient. While it is a legislative act, a Directive leaves it up to the individual countries to devise their own laws on how to reach the goal identified at the EU level. A Regulation would better enshrine the illegal nature of discrimination against cancer survivors as it would immediately become law across the EU in a harmonised way.