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N° 130 :




Continuing previous reflection on the questions posed by the collection of personal data and the new possibilities of their use in the life sciences and health, and following the États généraux de la bioéthique[1]· (Bioethics Forum), the CCNE in its Opinion 130 considers the ethical issues raised by the exploitation of big data· [2]·. In the context of accelerating technological and cultural changes linked to the treatment of big data, the CCNE points out how the massive accumulation of data on people and the value created by the increased capacity for processing these data call for debate and ethical reflection.


This opinion:

- sets out the ethical principles common to all contexts of the exploitation of big data in health (section 2);

- identifies the ethical challenges specific to the use of big data in healthcare, research, management of care, and personal life (section 3);

- proposes 12 recommendations that are essential for the respect of fundamental ethical principles and that enable, but do not hinder, the growth of technologies based on big data.

[1] See CCNE Opinion 129 "Contribution of the Comité consultatif national d'éthique to the revision of the bioethics law", and the report "Digital technologies and health. Which ethical issues for which regulations?" commissioned by the CCNE on artificial intelligence.


[2] Big data means the availability either of a large amount of data or of data of large size that can only be treated effectively by digital tools combining algorithms with great computing power. The change in scale is such that only machines, and no longer humans, are able to collect, store, and analyze data, and what is more these data are characterized mainly by three properties: their permanence (they can be copied and reused indefinitely); their dissemination in time andspace, which enables their rapid and borderless sharing; the generation of secondary data, ie, new information obtained by the processing and cross-referencing the initial data with other sources, which makes these data usable well beyond the purposes of the initial collection.