Informed consent and routinisation

Abstract

This article introduces the notion of 'routinisation' into discussions of informed consent. It is argued that the routinisation of informed consent poses a threat to the protection of the personal autonomy of a patient through the negotiation of informed consent. On the basis of a large survey, we provide evidence of the routinisation of informed consent in various types of interaction on the internet; among these, the routinisation of consent to the exchange of health related information. We also provide evidence that the extent of the routinisation of informed consent is dependent on the character of the information exchanged, and we uncover a range of causes of routinisation. Finally, the article discusses possible ways of countering the problem of routinisation of informed consent.

Meta Consent – A Flexible Solution to the Problem of Secondary Use of Health Data

“…a habitual, unreflective act. 22 In a recent study on consent behaviour in relation to the use of webportal containing personal health data, we have provided evidence of routinization. 23 The users of the portal are required to consent to the terms and conditions of use and the data protection policy of the site before use on the basis of being informed about these.…”

Routinisation of informed consent in online health care systems

“…Thus, we have previously shown that users with a short, medium or long university education tend to read more of consent materials [2]. This difference may be explained by the difference in the kind of activity requiring consent and the provider of the service.…”

“…Our previous studies of routinisation in relation to the use of various forms of ICT-services have revealed (1) that routinisation-indicated by the failure to read as well as reasons for not reading-occurs to significant degree across these services [2,22], and (2) that there is some evidence to the effect that the extent of routinisation is correlated with gender, education, age, and use of the internet such that the greater the level of routinisation the greater the ratio of (1) male users, (2) less educated, (3) younger and (4) extensive internet-users [3].…”

“…The questionnaire was developed from the questionnaire used in our previous studies [2,3], and was piloted in a group of students. The most important difference to the previous questionnaire is that we included possible reasons for reading the consent material.…”

“…A valid consent requires adequate knowledge and understanding of what is consented to. We have, however, in previous studies shown that across a wide selection of internet services few people read the information provided and the consent is provided as an 'act of routine' [2,3]. The present questionnaire study focuses on the use of the Danish National Health IT portal and investigates the extent and causes of routinisation of consent.…”