Social justice: a civilizing principle that also did not reach rare diseases


Social justice is a civilizing principle linked to the conviction that everyone deserves the right to live with dignity. Its main axes of action are the fight against poverty and the fight against any discrimination that prevents individuals from enjoying a good and safe life.

According to Pablo Dias Fortes, coordinator of the Bioethics, Applied Ethics, and Collective Health Program at ENSP (PPGBIOS) and researcher at the Department of Human Rights and Health (Dihs), the concept of “social justice” is based on the respect we owe one another as more or less vulnerable beings, that is, whose different needs also guide public policies in correcting individual and collective disadvantages.

Zara Homeless

Social justice and health

The idea of ​​health corresponds to a set of social conditions (political, environmental, economic, and cultural) favorable to a whole and rewarding existence for all. “In this context, nothing seems more indicative of the relationship between both concepts than the affirmation of health as a human right, whose meaning precisely involves a commitment by society to the maximum possible well-being for each of its members,” explained the coordinator.

cute ethnic poor children playing in shabby yard
Photo by Ahmed Akacha em <a href=httpswwwpexelscomphotocute ethnic poor children playing in shabby yard 6918509 rel=nofollow>Pexelscom<a>

According to him, in Brazil, although we have constitutionalized the right to health and expanded the population’s access to services and medical care through the SUS, many social injustices continue to directly and negatively impact the lives of millions of people, which means an apparent deficit of public policies to the detriment of the citizenship of countless groups and individuals. Emblems of this sad social picture are the return of misery and hunger in Brazil, the precariousness of labor relations, structural and institutional racism, femicide, violence against indigenous peoples, LGBT phobia, ableism, and other forms of prejudice and discrimination.

“With the health emergency caused by the new coronavirus pandemic, the situation has worsened even more, also the result of irresponsible and inhumane management by many rulers who have neglected their basic duty with public health and social justice,” pointed out Pablo. (TV.)

When it comes to health, equity is a matter of life and death
Margareth Chan, former director general of the World Health Organization

Every year on the 20th of February World Social Justice Day is celebrated

Three ways of conceiving justice


Muito resumidamente, em termos de justiça social no campo da saúde, podemos ter três abordagens básicas (no mínimo)

Very briefly, in terms of social justice in the field of health, we can have three basic approaches (at least)

Some believe justice is the pursuit of the greatest happiness for the most significant number of people. And that will exclude people with rare diseases and other minorities at first; others think that this position disadvantages minorities (Rawls) and advocate for equity. We’ve already seen all this on the blog, more precisely here and here

But today, I want to bring you a way of seeing the fair that seems most appropriate to consider the rights of people with rare diseases. It is the capabilities approach.

The capabilities approach, proposed by the American philosopher Martha Nussbaum, was one of the themes of an article I co-authored and which won the prize for the best scientific paper in a contest by the Superior Court of Justice.

This perspective is the best way to conceive social justice in public health and, by extension, concerning rare diseases.

As we maintain there:

A “decent society” should guarantee the dignity of its members not only in a negative way, omitting directly humiliating actions, but also in a positive way. She should create an “environment” that would allow the development of self-respect (NUSSBAUM, 2004: p.282). In particular, he emphasizes: each individual should possess “the social bases of self-respect and non-humiliation to the point of being treated as a worthy being, whose value is equal to that of others.” (NUSSBAUM: 2013: p. 283).

Unlike the utilitarian approaches that assign an accounting value to human life exemplified by the economic models for evaluating the quality of life and the cost-effectiveness analysis employed by Conitec, the capabilities perspective will propose that:

The full development of a person is only possible if he has the freedom to choose how to live, in a complete way, his capacities to be and do the best he can to shape his own life.

Martha Nussbaum

For this, society must remove the barriers that prevent or reduce the possibilities of this personal choice.

This is social justice!

And more!

Nussbaum believes that “to achieve a life compatible with the dignity of the human person,” one must seek a minimum level of some basic capabilities.

She identified an Aristotelian set of ten universal normative capacities that function as freedoms generally protected by law. They can be seen as basic needs, although they are also related to values.

Click the (+) for more details about each of them.

Note from the publishers

The main text, slightly adapted and authored by Tatiane Vargas, was initially published in the ENSP Report commemorating World Day of Social Justice, celebrated on February 20th—our thanks to Tatiane for the authorization to reproduce her clarifying text.

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