The life and death of confidentiality: a historical analysis of the flows of patient information.

Health data can contain sensitive information. People who consult a doctor seek help on issues that matter to them: they typically expect some form of confidentiality. However, the notion and practices of confidentiality have changed dramatically over time. In this article, we trace the history of confidentiality in the Danish healthcare system, which has one of the world's most integrated patient information infrastructures. Building on an analysis of legal and political documents dating back to the late seventeenth century, we show that confidentiality originated as a social phenomenon that helped build trust in healthcare professionals and gradually developed into an idiom of citizens rights. Lately, confidentiality has given way to more technocratic forms of data protection. As the political, legal and technological reality, which the idea of confidentiality once referred to, has radically changed, we argue that confidentiality has become what Ulrik Beck has called a 'zombie category'-a notion that lives on even if its content has passed away. If confidentiality has become a zombie concept, we suggest it is time to discuss what may take its place so that patient interests are protected in the current political economy of health data.

Health Disparities and New Health Technologies - A Patients' and Human Rights Perspective.

The human right to health requires that everyone should have equal opportunities to enjoy the highest attainable standard of health. In practice, this is hard to achieve, as health is shaped by social determinants. This article explores the impact personalized medicine and use of big data may have on health disparities. New health technologies offer a lot of hope for more individual and better health promotion and care, which potentially could be beneficial for the most deprived. However, there are also concerns that not all population groups will profit equally from this new population-based medicine, and that new digital health technologies will maintain - or even reinforce - existing health disparities. This article suggests using insights from poverty studies combined with a patients' and human rights-based approach to ensure that the most deprived are not left behind in the application of new health technologies.

Genomic Databases and Biobanks in Denmark.

Biobanking in Denmark is regulated via patients' rights laws, data protection laws, and research ethics reviews. Danish law recognizes tissue samples as personal data for purposes of the data protection laws, meaning research with tissue samples may be subject to research ethics review, data protection laws, and patients' rights requirements depending on the circumstances of collection. However, research on information gained through whole genome sequencing is subject only to data protection laws, despite the similarity in the nature of the information. The regulatory framework treats biobank samples collected from patients differently than samples collected from research participants, particularly with respect to autonomy. Importantly, biobanks established for future unspecified research are not subject to research ethics review. Biobank-based research has gained more prominence on the national level recently, and the potential for a less fragmented and more consistent regulatory approach may emerge from this attention.

Backward- and forward-looking responsibility for obesity: policies from WHO, the EU and England.

BACKGROUND: In assigning responsibility for obesity prevention a distinction may be drawn between who is responsible for the rise in obesity prevalence ('backward-looking responsibility'), and who is responsible for reducing it ('forward-looking responsibility'). METHODS: We study how the two aspects of responsibility figure in the obesity policies of WHO (European Region), the EU and the Department of Health (England). RESULTS: Responsibility for the emergence and reduction of obesity is assigned to both individuals and other actors to different degrees in the policies, combining an individual and a systemic view. The policies assign backward-looking responsibility to individuals, the social environment, the authorities and businesses. When it comes to forward-looking responsibility, individuals are expected to play a central role in reducing and preventing obesity, but other actors are also urged to act. WHO assigns to individuals the lowest degree of backward- and forward-looking responsibility, and the Department of Health (England) assigns them the highest degree of responsibility. DISCUSSION: Differences in the assignment of backward- and above all forward-looking responsibility could be explained to some extent by the different roles of the three authorities making the plans. WHO is a UN agency with health as its goal, the EU is a liberal economic union with optimization of the internal European market as an important task, and England, as an independent sovereign country, has its own economic responsibilities.

Stigmatisation as a public health tool against obesity--a health and human rights perspective.

The right to health is recognised in human rights law and is also part of the catalogue of patients' rights. It imposes a duty on governments to put in place a system of health protection making it possible for individuals to enjoy the highest attainable standard of health. However, disease patterns are constantly changing, and more and more attention is being paid to so-called lifestyle diseases. Individuals may expose themselves to health threats due to personal choices like eating and smoking habits, and this raises the issue of the individual's obligation with regard to ill health. Hence, is there not only a right to health but also a duty to be healthy? Using obesity as an example, and based on a cross-disciplinary research project, the article analyses selected European and national public health policy papers to see how individual rights and duties are framed and to analyse the use of stigmatisation as a public-health strategy from a health and human rights perspective.

Healthy ageing--a patients' rights perspective.

The demographic development is a challenge for the European healthcare systems, and to meet these challenges it is crucial to develop efficient health preventive strategies to ensure that the population is, and stays fit as long as possible. However, along with demographic development, Europe is also facing a boom in lifestyle diseases which constitute an impediment for healthy ageing. Smoking and obesity are considered to be the major causes in this regard. Both internationally and nationally there has been a strong commitment to reduce smoking, and it seems that a combination of information, economic incentives and legal regulation have been successful. The article explores whether the same public health strategy could be useful fighting obesity, and discusses whether such public health measures are compliant from a human and patients' rights perspective. Special questions regarding public health initiatives targeting elderly patients will also be addressed.

Forwards or backwards? New directions in Danish patients' rights legislation.

The Danish Patients' Rights Act from 1998 was the first comprehensive piece of legislation addressing the basic legal values and principles governing the relation between patient and the health care services. Since the adoption of the Act there has been continuous legislative activity in the field, and the objective of the article is to discuss how recent developments in Danish patients' rights legislation shall be interpreted in terms of balancing interests of patients towards interests of society and the health care professions.

Recent developments in Nordic health law.

The five Nordic countries--Denmark, Finland, Iceland, Norway and Sweden--share a considerable part of their cultural and historical heritage. They have collaborated closely in their development of legislation during most of the 20th century and are also all traditional welfare states, but nevertheless demonstrate a surprising degree of variety in the area of health law. The Nordic Network for Research in Biomedical Law was founded in 2006, with the aim to promote intra-disciplinary collaboration and stimulate comparative Nordic research in this field of law. Exchange of information on recent legal developments has been a recurrent point on the agenda at the Network meetings.

Diversity and harmonisation. Trends and challenges in European health law.

European countries share a number of fundamental values and ideas, but when it comes to the organisation of health care sectors and attitudes to basic patients' rights, there are also vast differences. Consequently, at the European level health law has to balance between the aspiration for uniformity and universal respect for fundamental rights on the one hand, and acceptance of national diversity on the other. The aim of the article is to characterise European health law in terms of both divergence and harmonisation, and to explore the tension between these two features in light of current trends and challenges.

[Patient rights in training situations]. / Patienters rettigheder i undervisningssituationer.

Danish health law does not explicitly consider the participation of patients in clinical training of medical students. This causes uncertainty with regards to patients' rights and to the obligations of the hospital and the medical student. In this paper, we evaluate the legal aspects as regards information, consent and privacy in situations where patients are involved in the training of medical students. We conclude that it is necessary to elucidate the legal aspects and develop legal and practical guidelines for these situations.