Between social and healthcare: a necessary synergy

 no Abstract

Article

In Italy, the parliamentary process for the adoption of a law on the prevention of discrimination and the protection of the rights of people suffering from oncological diseases has been completed.

The “oncological oblivion law”, requested by civil society, the scientific community, the country’s administrative and political leaders, is also part of the implementation of the recommendation European Parliament resolution of 16 February 2022 on strengthening Europe in the fight against cancer [1].

According to the text, people recovered from an oncological pathology have the right not to provide information and not to be the subject of investigations on their previous pathological condition. Furthermore, as regards access to banking, financial and insurance services, the request for information on the state of health of the policyholder relating to oncological pathologies already dealt with is not permitted, if the active treatment has been concluded for more than ten years without episodes of recurrence. This period is reduced by half if the pathology manifested itself before the age of twenty-one.

The text also provides that this information cannot be acquired from sources other than the contracting party and, if they are available from the operator or the intermediary, they cannot be used to determine the contractual conditions.

In Italy the number of people alive after about ten years from a cancer diagnosis is significant: almost 6% of the population (about 1 million people).

The impact of the law, therefore, is also relevant in terms of the size of the population involved.

Also significant is the fact that the term “healed” is used in the law. In oncology, the term “cured” has so far been rarely used, preferring terms such as “long-term survivor” or even “survivor”. In fact, it has long been known that there are patients who can, with a reasonable probability, be considered cured. The fact that a subject who has had an oncological pathology can be considered cured represents a radical paradigm shift: from “incurable cancer” to “chronic pathology cancer from which one can be cured”.

From an ethical point of view, it is important to consider that the right to have previous oncological pathologies forgotten is based on the protection of personal identity, i.e., in art. 2 of the Constitution. The right consists, in particular, of the right not to provide information about one’s past health status with regard to oncological diseases.

The “right to be forgotten” has some analogy with the “right to be left alone”, which is the first formulation of the right to privacy: Warren SD and Brandeis LD used it in 1890 in an article entitled “The right to privacy” published in the Harvard Law Reviews [2].

The right to be medically forgotten, however, should not be confused with the right to erasure of one’s personal data from the internet, which is grounded in Article 17 of the European Regulation no. 679 of 2017.

Thus, this first aspect, namely the protection of personal identity, concerns a foundation of ethics: the dignity of the person.

From an ethical point of view, the law is also significant because it highlights the many dimensions of health: not only the absence of disease, but also the possibility of living in normal conditions. Therefore, it is not only the principle of beneficence (doing people’s physical good) that must be applied: it is also necessary to restore people’s autonomy and to treat them with justice and fairness, to give everyone what they need.

This also corresponds to an increasingly deep-rooted awareness that the health dimension and the social dimension are closely intertwined.

Oncological oblivion also calls for reflection on another important notion in bioethics: vulnerability. Considering certain groups as “vulnerable populations” in relation to the normal condition makes little sense: we are all vulnerable, but certain categories of people are in a particularly vulnerable condition. In the case of cancer diseases, for many these special conditions are reversible: one can return to ordinary conditions.

Thus, in general, the law is significant for the protection of the rights of persons who have faced and overcome an oncological disease. It is, in fact, aimed at ensuring these persons fair and equal treatment with other persons in the context of financial, banking, and insurance activities, and also in the employment sphere, with measures relating to access to competitive selection procedures and recruitment and relating to active policies for entering and remaining at work. From an ethical point of view, it is significant that, unlike similar regulations in other countries, the Italian regulation also intervenes in the family sphere: recognition of suitability for adoption can no longer be denied to those who have recovered from cancer.

With this legislation, the aim is to ensure that clinical recovery also translates into the full exercise of civil and social rights, without being penalised because of one’s previous health condition.