Informed Consent in the Big Data Age: The Need for Normative Updates

Abstract

Big data is changing the usual practices of obtaining informed consent. Traditional informed consent models stop working because they don’t take into account the speed, volume, and variety of collected and processed data. In the traditional model it is extremely difficult to identify all possible uses for the information received from users, and obtaining secondary consent is difficult or simply impossible in a situation where data is depersonalized. As a re­sult, a person signing an informed consent gets into the situation described by J. Heller in the novel «Catch-22»: absurd rules aimed at taking care of the individual lead to the op­posite results. To avoid falling into catch-22, it is necessary to create new models of in­formed consent (the model of broad (full) consent, the model of dynamic consent, the mar­ket model, the model of postponed consent, the model of meta consent, the model of multi-level consent, the democratic model of consent), which can more effectively protect per­sonal autonomy, confidentiality, privacy and serve as a guarantor of trust in the subjects of collecting, processing, and using big data. Although the new models of informed consent are not without drawbacks, a complete rejection of this procedure entails a violation of the pre­cautionary principle and increases the likelihood of harm to the data subject. At the same time, following the precautionary principle should take into account the relationship be­tween the individual and the General good and not hinder the development of different spheres of public life in the condition of big data accumulation. The creation of rules governing the receipt of informed consent and the use of data should be based on an analysis of existing practices and take into account a measure of openness and trust, which are determined by both personal and socio-cultural characteristics.