Heisenberg, the bomb and the historical record

2002

Blood and data, ethical, legal and social aspects of …, 2004

International journal of technology policy and law, 2016

During the last decades, there has been continuous development of nationwide quality registries to assess healthcare and to do research in Sweden. An important background motive is the demographic transition resulting from an increasingly ageing population as one of the most important challenges of our time and a growing concern in many European countries and elsewhere. One condition for meeting this challenge in healthcare is to find more efficient ways of treatment for the elderly and persons with cognitive impairments. For such development research on these groups is necessary. To what extent, then, should research be allowed when people are permanently incapable of giving a valid consent to be included in research, statistics and systematic improvement studies? This paper discusses the tension between the need that also people with limited or no decision-making capacity participate in research and clinical evaluations, and the difficulty in ensuring the privacy of the incapacitated to the same degree that others enjoy. I will argue that Sweden has chosen to put the common good above the individual's privacy, and therefore have accepted a certain weakening of the incapacitated persons' privacy protection.

GOVERNING, 2009

Electronic copy available at: http://ssrn.com/abstract=1337695 ... THE END OF INDIIVIDUAL CONTROL OVER HEALTH INFORMATION: PROMOTING FAIR INFORMATION PRACTICES AND GOVERNANCE OF BIOBANK RESEARCH (Draft Text. Not to be cited or used ...

International Journal for Quality in Health Care, 2000

Privacy and confidentiality concerns-are we up to the challenge? used for research purposes if consulted, but expressed great Professor Detmer comments on the potential negative impact concern should the information be used without their knowof data privacy legislation on efforts to improve quality of ledge. For the majority of people, it seems, the opportunity for health care through review of administrative datasets and control over use of one's personal information does not electronic health records. As users of health informationresult in exercising that option of refusal or opting out [9, whether for policy-making, quality improvement, risk man-10]. This should not, however, be interpreted as evidence agement or for research-we have a great deal at stake in supporting the lack of need for such provisions. this matter. However, as stakeholders, we can easily fall into Why would the use of administrative datasets and other the trap of seeing things only from our own perspective. archival records for 'legitimate' research or planning purposes While I share Professor Detmer's concerns over the potential be considered a threat? Let us examine more closely the US consequences of severely restrictive laws or opt-out provisions General Accounting Office report cited by Professor Detmer. in legislation, I would argue that the choices we face are The good news was that the Office declared access to personcomplex and that we, as researchers and evaluators, must be specific information is necessary for medical research. The responsive to the concerns being expressed over the potential bad news was the concern that the research community for erosion of privacy. is not exercising the same diligence in the protection of Privacy and autonomy are fundamental to the fabric of confidentiality as it does physical and emotional harm. Pardemocratic society-of value to the entire community and ticular practices of concern to the GAO include: expedited not only to individuals. The recognition of the mutually review of research involving record review and concern over beneficial interplay between public and private life in society how decisions are made to waive consent provisions. The goes back at least as far as Aristotle, who recognized that report went on to cite previous studies from the GAO and the maintenance of the private is essential to both the from the Health and Human Services Office of the Inspector individual and the body politic, since the private place was General that these review bodies: where virtue was cultured [1]. With the recent exponential growth in our capacity to collect and process vast amounts 'review too many studies too quickly and with too little of information, considerable attention has been given to how expertise'. to stem the erosion of privacy [2]. Across the globe, we are 'conduct only minimal oversight of approved studies, face witnessing the clash between two value sets each of which conflicts of interest which threaten their independence and we hold dearly-privacy and improving the health of the provide little training for investigators and board members'. public. This scenario is being replicated across a wide variety [11] of settings from the commercial use of genetic registries to the development of health information highways [3-8]. Seen With this strong an indictment from such eminent and in this light, the challenge we face becomes much more influential bodies as the US General Accounting Office and complex, as does the solution. the Health and Human Services Office of Inspector General, While there may be a strong temptation to write-off we should take careful note, lest we lose the privilege of selfthose calling for increased protection for personal health monitoring and the scientific independence we so greatly information, an attempt to listen to their underlying concerns cherish. could prove very informative. For example, we conducted There are several ways in which we may respond. Many focus groups with people who were in contact with the professional Societies and Colleges are developing or revising medical system as patients, to determine how best to advise ethics guidelines and codes of conduct to guide their members patients of a study we were launching, involving electronic with regard to privacy, confidentiality, and security principles medical records in family physicians' offices. As investigators, [12,13]. Planning bodies are explicitly identifying privacy and we were struck by the high degree of participant concern confidentiality as important issues to be addressed in the over the current use of their personal health information and development of infostructures to support the use of adby the stories of misuse of that information, particularly ministrative datasets for a variety of planning purposes, among older patients. Incidents ranged from entire medical including quality improvement [7,14]. We need to work records being forwarded to insurers over accident claims to with our research ethics boards to address the challenges concerns over being 'labelled' by the medical community highlighted in the GAO report. At the level of the institution through communications from one physician to another. and the individual researcher, we need to become fluent with what are now internationally recognized fair information These same people were willing to have their information

GDPR and Biobanking

Norway is generally regarded as having good opportunities for biobank research because of Biobank Norway—its national infrastructure of biobanks—which represents one of the world’s largest existing resources within biobanking. It covers both consented population-based and disease-specific clinical biobanks. However, the regulatory framework in Norway for biobanking is fragmented, which makes navigating the legal landscape challenging.The Personal Data Act (PDA) implements the General Data Protection Regulation (GDPR), and a few adjustments were made in the national health legislation in order to bring it into line with the GDPR. The Health Research Act (HRA) enables the use of biobanking and personal data in research with and without the consent of individuals. There are some disagreements about the changes brought about by the GDPR when it comes to research on biological material that includes personal data. When implementing GDPR Article 89, it was emphasised that the Data Protect...

2021

This chapter describes the regulatory and organisational infrastructure of biobank research in Sweden, and how the introduction of the GDPR affects the possibilities to use biobank material in future research. The Swedish legislator has chosen a rather minimalistic approach in relation to the research exception in Article 89 GDPR and has only enacted limited general exceptions to the data protection rules. This may be partly explained by the comprehensive right to public access to official documents which gives researchers vast access to information held in registries, albeit conditioned on abiding by secrecy and confidentiality rules. The Swedish legislation implementing the GDPR includes a general exception from the data protection rules in relation to the right to access to official documents, which researchers also benefit from. However, confidentiality rules for different categories of information differ between sectors, which hinders an effective use of the registries in resea...

Innovations: Technology, Governance, Globalization, 2006

Iceland is a small democratic state of nearly 300,000 inhabitants that sits in the North Atlantic between the continents of Europe, America, and the Arctic. 1 Although it may seem an unlikely place for innovation of global significance, the small island nation of Iceland has assumed near iconic status in one field in particular: genomics. Aided by recent advances in genetic technologies and by a bold entrepreneurial vision, Iceland's genomic innovations have helped transform medical and genealogical information into a new type of global commodity. Furthermore, these innovations-or more precisely, the controversies they have spawned-have helped precipitate the development of global norms governing the relationship between citizens, medical information, markets, and the state. Iceland's public-private partnership has become a common reference point for other major population genomics initiatives-such as those in Sweden, the United Kingdom, Canada and the United States-but there is often an intriguing gap between what it stands for and what it has become. A November 2005 perspective piece in the New England Journal of Medicine is a good example of how in many accounts of Iceland, important details get lost. In this article, the authors argue that generating the next round of genetic discoveries will require a large number of "health information altruists" to supply health and DNA data and DNA. And they cite the Icelandic government's ability to construct a "national genomic databank," in collaboration with deCODE Genetics Inc., as an example of the public's altruism. 2 This sort of statement is not uncommon in articles written about Iceland, but one problem remains: the country's Health Sector Database, an international symbol of the new state-led genomics and the biotechnological frontier, was never built. Ten years ago, Kari Stefansson, an Icelandic neurologist turned biotech entrepreneur, co-founded deCODE Genetics and began operating in the suburbs of Iceland's capital. Eight years ago, Iceland passed the Health Sector Database (HSD) Act, which authorized the construction of the national database. Today, although deCODE continues to announce discoveries, 3 the controversial idea to allow the

Aristotele si riferisce forse a Zenone in un inciso: οἷον ἴσως τὸ ὂν ἢ τὸ ἓν πολλὰ σημαίνει, ἀλλὰ καὶ ὁ ἀποκρινόμενος καὶ ὁ ἐρωτῶν [Ζήνων] ἓν οἰόμενοι εἶναι εἰρήκασι, καὶ ἔστιν ὁ λόγος ὅτι ἓν πάντα come, per esempio, l'essere e l'uno hanno molt significat, ma tanto il rispondente quanto Zenone interrogante, pensino a un unico <significato>, donde la tesi che tupe le cose sono una sola Come fa notare Bert (p. 355), tu] i manoscri] riportano il nome di Zenone, a eccezione di uno che presenta, invece, quello di Parmenide: ammependo che il nome fosse effe]vamente quello di Zenone, Aristotele gli avrebbe riconosciuto una prassi diale]ca fapa di domande e risposte. Da cui potrebbe

Action, Perception and the Brain (117-46). Basingstoke, UK: Palgrave- Macmillan., 2012

In this chapter we address the following question: can enactive and extended conceptions of the mind agree on a model of intentionality? We explore several conceptions of intentionality in order to ask which one best supports the concept of mind implied by both the enactive and the extended views. We argue (1) that, although both enactive and extended views champion a non-Cartesian, noninternalist conception of mind, we only start to see what this conception of mind is when we adopt an enactivist conception of intentionality; (2) only by adopting this model of intentionality will the proponents of the extended mind hypothesis be able to fend off those critics who insist on defining the “mark of the mental” in terms of nonderivative (narrow or internal) content; and (3) working out this model of intentionality requires resolutions to a number of debates in the area of social cognition.