Privacy by Design, a globally accepted framework for personal data management and privacy protection, advances the view that privacy cannot be assured solely by compliance with regulatory frameworks but must become an organisation’s default mode of operation. We are proposing a similar template for the research ethics review process. The Research Ethics by Design framework involves research ethics committees engaging researchers during the design phase of the proposal so that ethical considerations may be directly embedded in the science as opposed (...) to being viewed as addendums after the fact. This collaborative research design proposal results in the establishment of a culture of ethical research rather than research with ethical oversight. Both researchers and research ethics committees come to view the review process as one in which individual protection and collective benefit co-exist in a doubly-enabling positive-sum manner. (shrink)

PurposeIn this paper, patient information is approached from a Heideggerian perspective with the intention to gather an understanding about the personal nature of the information. The purpose of this paper is to analyse the ownership of patient information and then present Datenherrschaft as a suitable model for patient ownership of patient information.Design/methodology/approachThis paper is theoretical in approach. It is based on arguments derived from Heidegger’s work in the Being and Time.FindingsBased on this Heideggerian approcah, a proposal for using the special (...) definition of ownership of patient information – Datenherrschaft – given to a patient is suggested. From a Heideggerian perspective, it can be stated that the patient has the strongest rights towards patient information because this information is crucial for a patient to have an understanding about their Dasein.Research limitations/implicationsDatenherrschaft is used as an example of an ethically justified way of regulating the patient information ownership and should be analysed further. Especially the practical implications of implementing Datenherrschaft need more research.Originality/valuePatient information ownership is an issue that is neither unambiguously solved in many countries, nor has it, in our view, been ethically justified. The potential solution – Datenherrschaft – presented in this paper is clear and has strong philosophical justifications. (shrink)