Online research in philosophy

What is privacy? What does privacy mean in relation to biobanking, in what way do the participants have an interest in privacy, (why) is there a right to privacy, and how should the privacy issue be regulated when it comes to biobank research? A relational view of privacy is argued for in this article, which takes as its basis a general discussion of several concepts of privacy and attempts at grounding privacy rights. In promoting and protecting the rights that participants in biobank research might have to privacy, it is argued that their interests should be related to the specific context of the provision and reception of health care that participation in biobank research is connected with. Rather than just granting participants an exclusive right to or ownership of their health information, which must be waived in order to make biobank research possible, the privacy aspect of health information should be viewed in light of the moral rights and duties that accompany any involvement in a research based system of health services.

Throughout the longstanding debate on privacy, the concept has been framed in various ways. Most often it has been discussed as an area within which individuals rightfully may expect to be left alone and in terms of certain data that they should be entitled to control. The sphere in which individuals should be granted freedom from intrusion has typically been equated with the indisputably private domestic sphere. Privacy claims in the semi-public area of work have not been sufficiently investigated. In this article, the case is made that employees have reasonable expectations on privacy at work. Firstly, in a descriptive analysis, employees’ need for workspace privacy is spelt out. Secondly, a normative analysis explicates the reasons why privacy should be protected. The main thrust is to provide a more inclusive privacy concept and hence, a more adequate basis for privacy protection legislation and codes in the area of work. Contrary to prevailing workplace privacy protection, employees’ need for local privacy should be accommodated as well as informational privacy.

The accuracy principle is one of the key standards of informational privacy. It epitomises the obligation for those processing personal data to keep their records accurate and up-to-date, with the aim of protecting individuals from unfair decisions. Currently, however, different practices being put in place in order to enhance the protection of individuals appear to deliberately rely on the use of ‘inaccurate’ personal information. This article explores such practices and tries to assess their potential for privacy protection, giving particular attention to their legal implications and to related ethical issues. Ultimately, it suggests that the use of ‘inaccurate’ data can potentially play a useful role to preserve the informational autonomy of the individual, and that any understandings of privacy or personal data protection that would tend to unduly limit such potential should be critically questioned.

Bioinformatics is a new field of study whose ethical implications involve a combination of bioethics, computer ethics and information ethics. This paper is an attempt to view some of these implications from the perspective of Buddhism. Privacy is a central concern in both computer/information ethics and bioethics, and with information technology being increasingly utilized to process biological and genetic data, the issue has become even more pronounced. Traditionally, privacy presupposes the individual self but as Buddhism does away with the ultimate conception of an individual self, it has to find a way to analyse and justify privacy that does not presuppose such a self. It does this through a pragmatic conception that does not depend on a positing of the substantial self, which is then found to be unnecessary for an effective protection of privacy. As it may be possible one day to link genetic data to individuals, the Buddhist conception perhaps offers a more flexible approach, as what is considered to be integral to an individual person is not fixed in objectivity but depends on convention.

This paper deals with intercultural aspects of privacy, particularly with regard to differences between Japanese and Western conceptions. It starts with a reconstruction of the genealogy of Western subjectivity and human dignity as the basic assumptions underlying Western views on privacy. An analysis of the Western concept of informational privacy is presented. The Japanese topic of ‘‘denial of self” (Musi) as well as the concepts of Seken, Shakai and Ikai (as analyzed by the authors of the companion piece on privacy in Japan) give rise to intercultural comparisons. The paper addresses the question of privacy in cyberspace and mass media. Finally the question of freedom of speech is related to the Japanese concepts of Ohyake and Watakusi.

Telecommunications services are for long subject to privacy regulations. At stake are traditionally: privacy of the communication and the protection of traffic data. Privacy of the communication is legally founded. Traffic data subsume under the notion of data protection and are central in the discussion. The telecommunications environment is profoundly changing. The traditionally closed markets with closed networks change into an open market with open networks. Within these open networks more privacy sensitive data are generated and have to be exchanged between growing numbers of parties. Also telecommunications and computer networks are rapidly being integrated and thus the distinction between telephony and computing disappears. Traditional telecommunications privacy regulations are revised to cover internet applications. In this paper telecommunications issues are recalled to aid the on-going debate. Cellular mobile phones have recently be introduced. Cellular networks process a particular category of traffic data namely location data, thereby introducing the issue of territorial privacy into the telecommunications domain. Location data are bound to be used for pervasive future services. Designs for future services are discussed and evaluated for their impact on privacy protection.

Privacy concerns involving data mining are examined in terms of four questions: (1) What exactly is data mining? (2) How does data mining raise concerns for personal privacy? (3) How do privacy concerns raised by data mining differ from those concerns introduced by traditional information-retrieval techniques in computer databases? (4) How do privacy concerns raised by mining personal data from the Internet differ from those concerns introduced by mining such data from data warehouses? It is argued that the practice of using data-mining techniques, whether on the Internet or in data warehouses, to gain information about persons raises privacy concerns that (a) go beyond concerns introduced in traditional information-retrieval techniques in computer databases and (b) are not covered by present data-protection guidelines and privacy laws.

Built-in privacy has for too long been neglected by regulators. They have concentrated on reacting to violations of rules. Even imposing severe fines will however not address the basic issue that preventative privacy protection is much more meaningful. The paper discusses this in the context of the International Working Group on Data Protection in Telecommunications ( Berlin Group ) which has published numerous recommendations on privacy-compliant design of technical innovations. Social network services, road pricing schemes, and the distribution of digital media content have figured prominently in the group’s latest working papers. More recently, a judgment of the European Court of Human Rights has thrown light on weaknesses in the protection of patients’ data in hospitals that requires urgent action by designers of IT systems. Built-in privacy is no magic button, no panacea, but it has turned out to be a necessary condition for meaningful privacy protection.

An introductory message from Peter Hustinx, European Data Protection Supervisor, delivered at Privacy by Design: The Definitive Workshop. This presentation looks back at the origins of Privacy by Design, notably the publication of the first report on Privacy Enhancing Technologies by a joint team of the Information and Privacy Commissioner of Ontario, Canada and the Dutch Data Protection Authority in 1995. It looks ahead and adresses the question of how the promises of these concepts could be delivered in practice.

In view of rapid and dramatic technological change, it is important to take the special requirements of privacy protection into account early on, because new technological systems often contain hidden dangers which are very difficult to overcome after the basic design has been worked out. So it makes all the more sense to identify and examine possible data protection problems when designing new technology and to incorporate privacy protection into the overall design, instead of having to come up with laborious and time-consuming patches later on. This approach is known as Privacy by Design (PbD).