Fools rush in. ALEXANDER POPE, AN ESSAY ON CRITICISM (London, 1711). The full quotation is, “For Fools rush in where Angels fear to tread.” Id. at 66. She who hesitates is lost. Adaptation of the line, “The woman that deliberates is lost.” JOSEPH ADDISON, CATO: A TRAGEDY, AND SELECTED ESSAYS 30 (2004). See also OLIVER WENDALL HOLMES, SR., THE AUTOCRAT AT THE BREAKFAST TABLE 29 (1858) (“The woman who ‘calculates’ is lost.”). American legal realism numbers among the most important theoretical (...) contributions of legal academia to date. Given the movement’s influence, as well as the common centrality of certain key figures, it is surprising that privacy scholarship in the United States has paid next to no attention to the movement. This inattention is unfortunate for several reasons, including that privacy law furnishes rich examples of the indeterminacy thesis — a key concept of American legal realism — and because the interdisciplinary efforts of privacy scholars to explore extra-legal influences on privacy law arguably further the plot of legal realism itself. (shrink)

Since 1991, over half the states have enacted laws that restrict or prohibit insurers’ use of genetic information in pricing, issuing, or structuring health insurance. Wisconsin was the first state to do so, in 1991, followed by Ohio in 1993, California and Colorado in 1994, and then several more states a year in each of the next five years. Similar legislation has been pending in Congress for several years. Also, a 1996 federal law known as the Health Insurance Portability (...) and Accountability Act prohibits group health insurers from applying “preexisting condition” exclusions to genetic conditions that are indicated solely by genetic tests and not by any actual symptoms. (shrink)

Privacy is protected in biobank-based research in the US primarily by the Health Insurance Portability and Accountability Act Privacy Rule and the Federal Policy for Protection of Human Subjects. Neither rule, however, was created to function in the unique context of biobank research, and therefore neither applies to all biobank-based research. Not only is it challenging to determine when the HIPAA Privacy Rule or the Common Rule apply, but these laws apply different standards to protect (...) class='Hi'>privacy. In addition, many other federal and state laws may be applicable to a particular biobank, researcher, or project. US law also does not directly address international sharing of data or specimens outside of the EU–US Safe Harbor Agreement, which only applies to receipt of data by certain US entities from EU countries, and is in the process of revision. Although new rules would help clarify privacy protections in biobanking, any implemented changes should be studied to determine the sufficiency of the protections as well as its ability to facilitate or hinder international collaborations. (shrink)

While the possibility of enacting a sui generis Biobank Act has been debated in Germany at great length, as of yet the country has not implemented any biobankspecific legislation. Instead, oversight is available via a network of research and privacy laws, including those of the European Union. The Nationale Kohorte, Germany's large-scale, population-based epidemiological research biobank, is funded by the Federal Ministry of Education and Research, and there are currently 108 registered bio-banks throughout Germany. The current system, including (...) the structure and study design of the Nationale Kohorte, privileges the protection of personal information even at the cost of socially desirable research; it remains to be seen if forthcoming legislation will shift this balance. (shrink)

The Journal of Law, Medicine &Ethics, Volume 43, Issue 4, Page 673-674, Winter 2015.

Upon Brexit, the United Kingdom chose to follow the path of EU data protection and remain tied to the requirements of the General Data Protection Regulation (GDPR). It even enacted the GDPR into its domestic law. This Article evaluates five models relating to preference change, demonstrating how they identify different dimensions of Brexit while providing a rich explanation of why a legal system may or may not reject an established transnational legal order. While market forces and a “Brussels Effect” played (...) the most significant role in the decision of the UK government to accept the GDPR, important nonmarket factors were also present in this choice. This Article’s models of preference change are also useful in thinking about the likely extent of the UK’s future divergence from EU data protection. (shrink)

Recent scientific and technological developments have promoted the emergence of biobanks on a population scale. Although the storage of human biological material has taken place for a long time, it is only recently that biobanks have acquired a broader scientific significance, especially for genomic research. The increase in biobanks creates many ethical dilemmas, such as the protection of privacy, and creates the need for a new regulatory framework, which must enable the sustainable development of biobanks while also protecting the (...) rights of research subjects and biobank participants. (shrink)

McCoy et al. introduces the novel Ethical Data Practices Framework and its six core principles to serve as a useful tool to inform both industry and lawmakers of key ethical principles for prospect...

In the early 1970s, Congress considered enacting comprehensive privacy legislation, but it was unable to do so. In 1974, it passed the Privacy Act, applicable only to information in the possession of the federal government. In the intervening years, other information privacy laws enacted by Congress, such as the Health Insurance Portability and Accountability Act, have been weak and sector specific. With the explosion of information technology and the growing concerns about an absence of effective federal (...) privacy laws, the legal focus has shifted to the states. Signaling a new direction in state data privacy and consumer protection law, the California Consumer Privacy Act establishes important rights and protections for California residents with regard to the collection, use, disclosure, and sale of their personal information. The CCPA is certain to spur similar legislation and to affect national and international businesses that collect data from California's residents. Understanding the new law is important for all data‐driven industries, including health care. (shrink)

Background: When a genetic mutation is identified in a family member, internationally, it is usually the proband’s or another responsible family member’s role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not to communicate the information or failing to communicate the information despite intention to do so, respectively. The ethical obligations to prevent harm to at-risk relatives and promote the duty of care by genetic health professionals is in conflict with (...) class='Hi'>Privacy laws and professional regulations that prohibits disclosure of information to a third party without the consent of the proband. In New South Wales, Australia, amendments to Privacy legislation permits such disclosure to living genetic relatives with the process defined under guidelines although there is no legal duty to warn. This study assessed NSW GHP’s awareness and experience of the legislation and guidelines. Methods: An online survey collected demographics; theoretical knowledge; clinical scenarios to assess application knowledge; attitudes; confidence; experience with active non-disclosure. A link to correct answers was provided after completion. Knowledge scores above the median for non-parametric data or above the mean for parametric data were classified as ‘good’ or ‘poor’. Chi square tests assessed associations between confidence and knowledge scores. Results: While many of the 37 participants reported reading the guidelines, there was limited awareness of their scope and clinical application; that there is no legal duty to warn; and that the threat does not need to be imminent to warrant disclosure. No association between confidence and ‘good’ theoretical or applied clinical knowledge was identified. Uncertainty of their professional responsibility was identified and in the several case examples of active non-disclosure that were reported this uncertainty reflected the need for further understanding of the guidelines in regard to the processes required before disclosure was initiated. Conclusions: There is a need for further education and training about the guidelines associated with the legislation that would be relevant to support disclosure. The findings may inform future strategies to support introduction of policy changes in other jurisdictions where similar regulatory regimes are introduced. (shrink)

Australia is a multi-cultural society with a population of nearly 24 million. The Aboriginal heritage traces back some 40,000 years and continues to influence Australian culture as a whole. A large proportion of Australian citizens were of British descent or birth at the outset of the last century, but post-World War II there was significant immigration from other European nations, particularly from Greece and Italy. In the last decades, there has been a significant intake of migrants from Asia.

Along with many jurisdictions, Australia is struggling with the unique issues raised by genetic information in the context of privacy laws and medical ethics. Although the consequences of disclosure of most private information are generally confined to individuals, disclosure of genetic information has far-reaching consequences, with a credible argument that genetic relatives have a right to know about potential medical conditions. In 2006, the Privacy Act was amended to permit disclosure of an individual's genetic information, without their (...) consent, to genetic relatives, if it was to avoid or mitigate serious illness. Unfortunately, additional amendments required for operation of the disclosure amendment were overlooked. Public Interest Determinations —delegated legislation issued by the privacy commissioner—have, instead, been used to exempt healthcare providers from provisions which would otherwise make disclosure unlawful. This paper critiques the PIDs using documents obtained under the Freedom of Information Act—specifically the impact of both the PIDs and the disclosure amendment on patients and relatives—and confidentiality and the procedural validity of subordinate laws regulating medical privacy. (shrink)

This is a frustrating book: on the one hand, it promises a new outlook on the philosophy of privacy, based upon the work of Luciano Floridi and Baruch Spinoza, which is a welcome extension of the sources used to think about privacy in contemporary political philosophy; on the other hand, it virtually ignores the existing literature on the philosophy and law of privacy. As the presentation of the legal and philosophical issues tends to be schematic, it is (...) quite difficult to know what the book offers by way of additions and corrections to the larger literature on privacy. The book has a bibliography after each chapter, which makes it hard to assess the sources overall, and to find references, unless you remember the chapter in which they occurred. This reinforces the sense that what is presented as a monograph is really a set of independent essays or lectures which, while individually interesting, do not give the reader a clearer sense of the way legal and philosophical issues about privacy fit together. [First paragraph]. (shrink)

From the Supreme Court to the bedroom, privacy is an intensely contested interest in our everyday lives and privacy law. Some people appeal to privacy to protect such critical areas as abortion, sexuality, and personal information. Yet, privacy skeptics argue that there is no such thing as a right to privacy. I argue that we cannot abandon the concept of privacy. If we wish to avoid extending this elusive concept to cover too much of (...) our lives or shrinking it to cover too little, we must come to understand it. After exploring the privacy arguments of philosophers and constitutional and tort privacy law, I argue for a new definition of privacy and an explanation of its value that clarifies and resolves many of our conflicts. Privacy is critical because it allows us to protect a realm in which we can have intimate relations with others. (shrink)

Digital privacy scholars tend to bemoan ordinary people’s limited knowledge of and lukewarm interest in what happens to their digital data. This general lack of interest and knowledge is often taken as a consideration in favor of legislation aiming to force internet companies into adopting more responsible data practices. While we remain silent on whether any new laws are called for, in this paper we wish to underline a neglected consequence of people’s ignorance of and apathy for digital (...) privacy: their potential to encourage capture by industry interests. In particular, we argue that such laws may be at increased risk of capture because they are unlikely to be democratically responsive. We make this claim on a twofold basis: first, well-known theoretical mechanisms explaining how the absence of responsiveness leads to capture, identified in prior political science and political philosophy literature, yield the prediction that digital privacy legislation is likely to be unresponsive and thus captured; second, empirical data concerning the European Union’s digital privacy laws, with a special focus on the General Data Protection Regulation, appears to confirm these predictions: the bloc’s (world’s?) flagship privacy protection law seems more responsive to corporate than citizen interests. (shrink)

BackgroundThe COVID-19 pandemic has presented extraordinary challenges to worldwide healthcare systems, however, prevalence remains low in some countries. While the challenges of conducting research in high-prevalence countries are well published, there is a paucity from low COVID-19 countries.MethodsA PRISMA guided systematic review was conducted using the databases Ovid-Medline, Embase, Scopus and Web of Science to identify relevant articles discussing ethical issues relating to research in low prevalence COVID-19 countries.ResultsThe search yielded 133 original articles of which only 2 fit the inclusion (...) criteria and aim, with neither specific to low prevalence. Most of the available literature focused on clinical management and resource allocation related to high prevalence countries. These results will be discussed under the ethical dimensions of equity, individual liberty, privacy and confidentiality, proportionality, public protection, provision of care, reciprocity, stewardship and trust..ConclusionsA systematic review failed to identify articles relating to COVID-19 research ethics, specific to low prevalence countries. It shows that there is a significant gap in the literature that warrants further investigation. Common ethical principles were used to present a distinct set of challenges experienced by a country with a low prevalence of COVID-19. This unique perspective of some of the common ethical problems surrounding research, may help guide further discussion and guide research in similar countries. (shrink)

This chapter contains sections titled: Focus: The United States Theorizing about Privacy Meaning and Definition Questions of Value Conclusion References.

This volume analyses the moral and legal foundations of privacy, security, and accountability along with the tensions that arise between these important individual and social values.

An exploration of the risks and benefits of AI, particular regarding privacy.

Digital privacy scholars tend to bemoan ordinary people’s limited knowledge of and lukewarm interest in what happens to their digital data. This general lack of interest and knowledge is often taken as a consideration in favor of legislation aiming to force internet companies into adopting more responsible data practices. While we remain silent on whether any new laws are called for, in this paper we wish to underline a neglected consequence of people’s ignorance of and apathy for digital (...) privacy: their potential to encourage capture by industry interests. In particular, we argue that such laws may be at increased risk of capture because they are unlikely to be democratically responsive. We make this claim on a twofold basis: first, well-known theoretical mechanisms explaining how the absence of responsiveness leads to capture, identified in prior political science and political philosophy literature, yield the prediction that digital privacy legislation is likely to be unresponsive and thus captured; second, empirical data concerning the European Union’s digital privacy laws, with a special focus on the General Data Protection Regulation, appears to confirm these predictions: the bloc’s (world’s?) flagship privacy protection law seems more responsive to corporate than citizen interests. (shrink)

Both the European Union and the Council of Europe have a bearing on privacy in genomic databases and biobanking. In terms of legislation, the processing of personal data as it relates to the right to privacy is currently largely regulated in Europe by Directive 95/46/EC, which requires that processing be “fair and lawful” and follow a set of principles, meaning that the data be processed only for stated purposes, be sufficient for the purposes of the processing, be kept (...) only for so long as is necessary to achieve those purposes, and be kept securely and only in an identifiable state for such time as is necessary for the processing. The European privacy regime does not require the de-identification of personal data used in genomic databases or biobanks, and alongside this practice informed consent as well as governance and oversight mechanisms provide for the protection of genomic data. (shrink)

Privacy laws are fundamental to protecting individual freedom and autonomy against the tyranny of the majority, and the social orthodoxy imposed through gossip. While it is widely recognized within academic debate that there are limits to freedom of expression, there is little debate about the limits to the right of privacy. We argue that the public interest is a limit to the right of privacy, mediating between the rights of expression and freedom and the flow of (...) information. In doing so, it clarifies not only when invasions of privacy are morally justified, but when claims to privacy are morally unjustified. (shrink)

In 1905 the Supreme Court of Georgia became the first state high court to recognize a freestanding “right to privacy” tort in the common law. The landmark case was Pavesich v. New England Life Insurance Co. Must it be a cause for deep jurisprudential concern that the common law right to privacy in wide currency today originated in Pavesich’s explicit judicial interpretation of the requirements of natural law? Must it be an additional worry that the court which originated (...) the common law privacy right asserted that a free white man whose photograph is published without his consent in a city newspaper is like a slave in bondage? I argue that the jurisprudence of Pavesich need not be troubling. Pavesich’s natural law argument was supplemented by several positive law arguments. The positive law arguments were a strong enough basis for finding a right to privacy in the common law, as indeed Samuel Warren and Louis Brandeis had previously argued. The observation that the Pavesich court’s natural law argument ran alongside positivistic arguments suggests that the arresting, high-toned natural law and slavery appeals in Pavesich are inessential rhetorical throwaways. But I maintain that the natural law argument and slavery analogy features of Judge Andrew Jackson Cobb’s opinion extolling the “liberty of privacy” are (1) of critical importance to a full contextual understanding of the decision and (2) illuminate the contemporary case for recognizing invasions of privacy as civil injuries to freedom and self-determination. One can poke holes in the logic of Thomas Aquinas and John Locke as scholars have done for centuries. But one can as easily choose to celebrate the spirit of the natural law tradition. The natural law tradition represents efforts rhetorically, rationally, and intuitively to derive principles of justice and goodness from basic facts about human characteristics, needs, and desires, where otherwise binding sovereign law may fall short. (shrink)

This article discusses the role of moral argument in the Constitutional case law of the Irish courts. It looks at the debate on the constitutional morality of sexuality in four major cases: a 1973 case protecting the right to use contraceptives; a 1984 case which upholds discrimination against gay men; a 1987 case limiting access to abortion information; and a 1992 case which finds a limited right to abortion in the Constitution. These cases show the role of the courts in (...) contributing to a debate on political morality, both proposing new visions of political morality, and elaborating on the requirements of the current one. (shrink)

Intelligent Transportation Systems are expected to automate how parking slots are booked by trucks. The intrinsic dynamic nature of this problem, the need of explanations and the inclusion of private data justify an agent-based solution. Agents solving this problem act with a Believe Desire Intentions reasoning, and are implemented with JASON. Privacy of trucks becomes protected sharing a list of parkings ordered by preference. Furthermore, the process of assigning parking slots takes into account legal requirements on breaks and driving (...) time limits. Finally, the agent simulations use the distances, the number of trucks and parkings corresponding to the proportions of the current European Union data. The performance of the proposed solution is tested in these simulations with three different distances against an alternative with complete knowledge. The difference in efficiency, the number of illegal breaks and the traveled distances are measured in them. Comparing the results, we can conclude that the nonprivate alternative is slightly better in performance while both alternatives do not produce illegal breaks. In this way the simulations show that the proposed privacy protection does not impose a relevant handicap in efficiency. (shrink)

This paper seeks to identify the distinctive moral wrong of stalking and argues that this wrong is serious enough to criminalize. We draw on psychological literature about stalking, distinguishing types of stalkers, their pathologies, and victims. The victimology is the basis for claims about what is wrong with stalking. Close attention to the experiences of victims often reveals an obsessive preoccupation with the stalker and what he will do next. The kind of harm this does is best understood in relation (...) to the value of privacy and conventionally protected zones of privacy. We compare anti-stalking laws in different jurisdictions, claiming that they all fail in some way to capture the distinctive privacy violation that stalking involves. Further reflection on the seriousness of the invasion of privacy it represents suggests that it is a deeply personal wrong. Indeed, it is usually more serious than obtrusive surveillance by states, precisely because it is more personal. Where state surveillance genuinely is as intrusive as stalking, it tends to adopt the tactics of the stalker, imposing its presence on the activist victim at every turn. Power dynamics —whether rooted in the power of the state or the violence of a stalker —may exacerbate violations of privacy, but the wrong is distinct from violence, threats of violence and other aggression. Nor is stalking a simple expression of a difference in power between stalker and victim, such as a difference due to gender. (shrink)

The paper begins with a defence of a new definition of privacy as the absence of undocumented personal knowledge. In the middle section, I criticise alternative accounts of privacy. Finally, I show how my definition can be worked into contemporary American Law.

Neuroscience has begun to intrude deeply into what it means to be human, an intrusion that offers profound benefits but will demolish our present understanding of privacy. In Privacy in the Age of Neuroscience, David Grant argues that we need to reconceptualize privacy in a manner that will allow us to reap the rewards of neuroscience while still protecting our privacy and, ultimately, our humanity. Grant delves into our relationship with technology, the latest in what he (...) describes as a historical series of 'magnitudes', following Deity, the State and the Market, proposing the idea that, for this new magnitude, we must control rather than be subjected to it. In this provocative work, Grant unveils a radical account of privacy and an equally radical proposal to create the social infrastructure we need to support it. (shrink)

This is a collection of essays touching on four distinct areas of interest to philosophers, lawyers, and political scientists: the philosophical justification for the adversary system; the problems of truth-finding in an adversarial setting; the issue of justice in relation to social policy-making; the right to privacy.

Susser and Cabrera (2024) assess the role of bespoke neuro-privacy regulations including the creation of a novel right to mental privacy. They argue that focusing on what distinguishes mental priva...

The complexity and emergent autonomy of Generative AI systems introduce challenges in predictability and legal compliance. This paper analyses some of the legal and regulatory implications of such challenges in the European Union context, focusing on four areas: liability, privacy, intellectual property, and cybersecurity. It examines the adequacy of the existing and proposed EU legislation, including the Artificial Intelligence Act (AIA), in addressing the challenges posed by Generative AI in general and LLMs in particular. The paper identifies potential gaps (...) and shortcomings in the EU legislative framework and proposes recommendations to ensure the safe and compliant deployment of generative models. (shrink)

The phenomenon of the New Genetics raises complex social problems, particularly those of privacy. This book offers ethical and legal perspectives on the questions of a right to know and not to know genetic information from the standpoint of individuals, their relatives, employers, insurers and the state. Graeme Laurie provides a unique definition of privacy, including a concept of property rights in the person, and argues for stronger legal protection of privacy in the shadow of developments in (...) human genetics. He challenges the role and the limits of established principles in medical law and ethics, including respect for patient autonomy and confidentiality. This book will interest lawyers, philosophers and doctors concerned both with genetic information and issues of privacy; it will also interest genetic counsellors, researchers, and policy makers worldwide for its practical stance on dilemmas in modern genetic medicine. (shrink)

Privacy concerns involving data mining are examined in terms of four questions: What exactly is data mining? How does data mining raise concerns for personal privacy? How do privacy concerns raised by data mining differ from those concerns introduced by traditional information-retrieval techniques in computer databases? 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 go beyond concerns introduced in traditional information-retrieval techniques in computer databases and are not covered by present data-protection guidelines and privacy laws. (shrink)

The digital age brings with it novel forms of data flow. As a result, individuals are constantly being monitored while consuming products, services and content. These abilities have given rise to a variety of concerns, which are most often framed using “privacy” and “data protection”-related paradigms. An important, oft-noted yet undertheorized concern is that these dynamics might facilitate the manipulation of subjects; a process in which firms strive to motivate and influence individuals to take specific steps and make particular (...) decisions in a manner considered to be socially unacceptable. That it is important and imperative to battle manipulation carries with it a strong intuitive appeal. Intuition, however, does not always indicate the existence of a sound justification or policy option. For that, a deeper analytic and academic discussion is called for. This Article begins by emphasizing the importance of addressing the manipulation-based argument, which derives from several crucial problems and flaws in the legal and policy setting currently striving to meet the challenges of the digital age. Next, the Article examines whether the manipulation-based concerns are sustainable, or are merely a visceral response to changing technologies which cannot be provided with substantial analytical backing. Here the Article details the reasons for striving to block manipulative conduct and, on the other hand, reasons why legal intervention should be, in the best case, limited. The Article concludes with some general implications of this discussion for the broader themes and future directions of privacy law, while trying to ascertain whether the rise of the manipulation-based discourse will lead to information privacy’s expansion or perhaps its demise. (shrink)

The object of this article is to clarify the relationship between morality and family law in a variety of legal situations. This will give the reader a better grasp of the kind of case to be included in the traditionalist claim that the idea of legal intervention in the family is a coherent notion. Once this is sorted, we will be in a position to discuss and clarify the radical thesis that "the personal is political.".