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This chapter discusses privacy principles that are valuable in making judgments about the use and disclosure of personal information, the legal requirements governing health statistical information, and some policy and practical problems encountered in managing this information. Public health practitioners need an ethical and conceptual framework for making decisions about the use and disclosure of identifiable information about individuals. Tradition and ethical commitment, often supported by legal protections, have provided that framework and resulted in careful stewardship of personal health information. Current developments in information and communications technology present new problems for that stewardship. They call for continuing attention to ensure that policy, legal, and technical measures to protect sensitive information keep pace with those developments.

This chapter sets out the NCC's agenda and recommendations. The NCC believes that the importance of the personal information economy must be appreciated more widely. This chapter sets out a series of recommendations, which range from the reform of data protection legislation to the promotion of privacy impact assessments and privacy-enhancing technologies. It emphasises the significance of the personal information economy and how much remains to be done to tackle its challenges. It explains that the NCC is keen to promote change, to move beyond dogma by encouraging an enlightened personal information agenda.

Curation is a critical information management problem that has often been overlooked by prior information science research. Curation is important because people are increasingly acquiring large, heterogeneous archives of valuable personal data that they find difficult to manage and access. This chapter contrasts curation, where users are responsible for organizing their own personal information, with traditional information management models, which focus on consumption of public information organized by others. The chapter introduces the key curation lifecycle processes of keeping, management and exploitation, describing the interrelations between them. It argues that curation processes are deep-rooted and somewhat resistant to technology change.

This chapter discusses why the personal information economy is of fundamental and growing importance. It notes that the economy's operation increasingly will define our experience and choices as consumers, yet its impact is insufficiently understood and inadequately addressed. While debates such as those on identity cards capture extensive media coverage in the UK, it argues that the everyday, pervasive ways information use affects consumers lies largely unexplored. It outlines the personal information economy and some of the key issues it raises.

Privacy concerns play a significant part in the deployment and use of biometric systems of identification, and are central to the public policy debate over the use of biometric technology. Privacy is considered an important factor in understanding societal acceptance of biometric technology. This chapter focuses on the relationship between privacy and biometric technology. There has been a wide concern over losing privacy in the context of using biometric systems of identification. Citizens get apprehensive about how the institutions deploying biometric technology use their personal information. In the current scenario of the information age and technological advancement, the protection of privacy is an important aspect that needs to be addressed sensibly to make people accept the biometric systems of identification. Biometric technology may protect privacy by serving as a tool of identity assurance in protecting the exchange of personal information.

This chapter is concerned with claims for what is commonly known as breach of confidence. Until quite recently, reliance on the cause of action for breach of confidence has been one of the two main ways in which claims to protect or vindicate privacy have been pursued in English law. The other, much less significant in practice, is reliance on statutory rights such as those afforded by the Data Protection Act 1998. Today, as a result of the House of Lords’ decisions in Campbell v MGN Ltd and Douglas v Hello! Ltd, it is possible to differentiate between two different kinds of claim: (i) traditional breach of confidence actions; and (ii) claims for misuse of private information. The first of these kinds of claim will be discussed in this chapter. The second, misuse of private information, is a cause of action which has developed in the present century originating in, becoming separate and distinct from, breach of confidence. It will be addressed separately in Chapter 5.

This chapter presents an overview of the personal information economy, exploring its development and importance. It notes the difficulty of overestimating the importance of personal information — global retail organisations take investment decisions based on the most finely grained analysis of consumers's data. It also warns of the risks and builds a framework detailing the risks of the said economy. It notes that traditionally, much attention has been focused on risks of intrusion when considering consumers' information but less attention has been paid to risks to life chances that arise from the ways the economy works.

This chapter explores conceptual frameworks for sharing information in the world of children's services. It first sketches the longstanding policy emphasis on person- or child-centred services and its recent critique. Next, some of the substantial volume of recent consultation with children and young people about the use of their personal information is briefly discussed. The chapter asks whether current approaches offer a sustainable framework for the near future. The ‘privacy pragmatism’ approach first propounded in the Cabinet Office report on information sharing is considered as a potential theoretical prop, together with ‘personal learning planning’ as a potential fulcrum, for the bridge-building that is necessary if information sharing practice is to take account of rapidly developing trends in the lived experiences of children and young people. Reframing our consideration of this issue provides an opportunity to build towards a sustainable set of social relationships between people, their personal data, and its public custodians.

This chapter provides an overview of freedom of information as it is practiced in Scotland, with particular emphasis on issues concerning third-party data. One of the most common and contentious disputes under the Freedom of Information (Scotland) Act 2002 (FOISA) has to do with third-party data and whether the exemption at s 38(1)(b) applies, an issue that pits the right to information against the right to privacy. The task is to reconcile the legal imperative to keep personal information safe and to prevent it being misused by those who have collected it. The courts have made it clear that the general presumption in favour of disclosure created by FOISA does not apply to personal data. Where disclosure of information would contravene the data protection principles, the exemption in FOISA is absolute, and the authority is not required to go on to consider where the balance of the public interest lies in relation to the information. In practice, the key issues to consider are whether the requested information constitutes personal data and, if so, whether disclosure would contravene any of the data protection principles.

This chapter focuses on the kind of policy and procedures that are needed to deal with issues of confidentiality and privacy in professional practice, and the practical requirements for responsible institutional management of personal information. It argues that workable and defensible practices for handling privacy and confidentiality should be developed in dialogue grounded in the real world of agencies and service practice. The chapter suggests that the mystification of ethics as an abstract discipline has hindered the development of practical ethics for agency policy and professional practice. It examines and compares two cases in which the author was directly involved as a research consultant. The first is from Western Australia, where inadvertent disclosure of personal health information in the press provoked calls for the Minister of Health to resign and necessitated the development of policy and procedures to deal with the ensuing crisis. The second relates to developing a youth justice strategy within the Integrated Children's Services Plan for the Outer Hebrides.

This chapter deals with types of surveillance data. Such data are honeycombed with attributes and tacit expectations that can be systematically compared. What are the major kinds of data that surveillance may gather? How do the characteristics of these data affect explanation, evaluation, manners, policy and law? When we speak of surveillance, just what is “it” that is surveilled? What cultural expectations and attitudes accompany different kinds of data? A central argument of the book is that understanding and evaluating surveillance require attention to the setting but the kind of data (visual, auditory, text etc.) may be independent of this. The chapter identifies four basic types by combining dimensions of personal-impersonal and private-public. It also identifies ten types of information that can be connected to the person (e.g., temporal, behavioral, beliefs) and a series of analytic attributes that may cut through these such as intimate, personal, sensitive and unique and or core identification.

This chapter explores how personal information is now handled in the National Health Service (NHS) and examines its future plans. It argues that shifts in the structure of health services and the replacement within the NHS of the paradigm of confidentiality with that of data protection should not be seen as damaging. It notes that health service organisations have greater power to protect patient confidentiality than individual professionals could have done.

Ethical concerns have been a prominent feature of the debate about the HIV pandemic. Most ethical issues had already been analyzed by 1996, when HAART became available, but few of those issues have been re-analyzed since then. Also, few of the newer issues raised by HAART itself have been analyzed exhaustively. These issues include concerns about the generation and communication of personal information, rights to, care of people infected with HIV, as well as rights in relation to prevention and vaccine research. The capacity of HAART to prevent infection following a variety of HIV exposures raises concerns about HIV testing and disclosure of personal information. Some issues arise from availability of HAART, whereas others arise from its lack of availability, especially in developing countries. This chapter briefly examines the principle ethical issues that HAART highlights as a basis for encouraging future investigations and discussion.

This chapter provides a discussion on how to connect personal genomic information with other forms of molecular data, also exploring how to analyze these connections to draw out conclusions about the likely effects that personal genome composition have on an individual's physiology. The chapter provides several cases and analyses for study and review, but also warns that these particular analyses detailed within the chapter are of an advanced level and are still the subject of intense research. Despite that complication, however, the chapter offers critical insights into the future directions of personal genome exploration. In addition, the approaches detailed in the chapter also have the capacity to yield interesting and valuable insights into the relationship between personal genotype and personal physiology.