Reaching for informed revocation: shutting off the tap on personal data

Abstract. We introduce a revocation model for handling personal data in cyberspace. The model is motivated by a series of workshops undertaken by the EnCoRe project aimed at understanding the control requirements of a variety of data subjects. We observe that there is a lack of understanding of the various technical options available for implementing revocation preferences, and introduce the concept of informed revocation by analogy to Faden and Beauchamp’s informed consent. We argue that we can overcome the limitations associated with informed consent via the implementation of EnCoRe technology solutions. Finally, we apply our model and demonstrate its validity to a number of datahandling scenarios which have arisen in the context of the EnCoRe research project. We have found that users tend to alter their default privacy preferences when they are informed of all the different types of revocation available to them

Ethics and advance care planning in a culturally diverse society

Emerging international research suggests that in multicultural countries, such as Australia and the United States, there are significant disparities in end-of-life care planning and decision making by people of minority ethnic backgrounds compared with members of mainstream English-speaking background populations. Despite a growing interest in the profound influence of culture and ethnicity on patient choices in end-of-life care, and the limited uptake of advance care plans and advance directives by ethnic minority groups in mainstream health care contexts, there has been curiously little attention given to cross-cultural considerations in advance care planning and end-of-life care. Also overlooked are the possible implications of cross-cultural considerations for nurses, policy makers, and others at the forefront of planning and providing end-of-life care to people of diverse cultural and language backgrounds. An important aim of this article is to redress this oversight.<br /

Can the written information to research subjects be improved?--an empirical study.

OBJECTIVES: To study whether linguistic analysis and changes in information leaflets can improve readability and understanding. DESIGN: Randomised, controlled study. Two information leaflets concerned with trials of drugs for conditions/diseases which are commonly known were modified, and the original was tested against the revised version. SETTING: Denmark. PARTICIPANTS: 235 persons in the relevant age groups. MAIN MEASURES: Readability and understanding of contents. RESULTS: Both readability and understanding of contents was improved: readability with regard to both information leaflets and understanding with regard to one of the leaflets. CONCLUSION: The results show that both readability and understanding can be improved by increased attention to the linguistic features of the information