It has been recommended that parents should monitor their children’s Internet use, including what sites their children visit, what messages they receive, and what they post. In this paper, I claim that parents ought not to follow this advice, because to do so would violate children’s right to privacy over their on-line information exchanges. In defense of this claim, I argue that children have a right to privacy from their parents, because such a right (...) respects their current capacities and fosters their future capacities for autonomy and relationships. (shrink)

The widespread practices of data collection by third-party actors pose challenges to children’s and adolescents’ privacy when they navigate digital environments. Given that the informed-consent par...

Arguing that everyone has a right to privacy as control overaccess to `intimate' aspects of one's life, this author draws on thework of Julie Inness to discuss children's rights to privacy inclassrooms. Even if it is agreed that pupils should exercise this right,a central point is that there may be moral or other value considerationsthat justify setting the right aside. Among selected complexities, animportant extension is the right to psychological processes throughwhich learners acquire new knowledge.

EDUCERE is a government funded research and development project. EDUCERE objectives are to investigate, develop, and evaluate innovative solutions for society to detect changes in psychomotor development through the natural interaction of children with toys and everyday objects, and perform stimulation and early attention activities in real environments such as home and school. In the EDUCERE project, an ethical impact assessment is carried out linked to a minors’ data protection rights. Using a specific methodology, the project has achieved some (...) promising results. These include use of a prototype of smart toys to detect development difficulties in children. In addition, privacy protection measures which take into account the security concerns of health data, have been proposed and applied. This latter security framework could be useful in other Internet of Things related projects. It consists of legal and technical measures. Special attention has been placed in the transformation of bulk data such as acceleration and jitter of toys into health data when patterns of atypical development are found. The article describes the different security profiles in which users are classified. (shrink)

Children’s digital playgrounds have evolved from commercialized digital spaces such as websites and games to include an array of convergent digital media consisting of social media platforms, mobile apps, and the internet of toys. In these digital spaces, children’s data is shared with companies for analytics, personalization, and advertising. This article describes children’s digital playgrounds as a data assemblage involving commercial surveillance of children, ages 3–12. The privacy sweep is used as a method to follow (...) the personal information traces that can be expected to be disclosed through typical use of two children’s digital playgrounds: the YouTube Kids app and Fisher-Price Smart Toy plush animal and companion app. To trace the data flows, privacy policies and other publicly available documents were analyzed using political economy and privacy informed indicators. This article concludes by reflecting upon the dataveillance and commercialization practices that trouble the privacy rights of the child and parent when data assemblages in children’s digital playgrounds are surveillant. (shrink)

Information communication technology is spreading fast and wide. Driven by convenience, it enables people to undertake personal tasks and make decisions more easily and efficiently. Convenience enjoys an air of liberation as well as self-expression affecting all areas of life. The industry for children's toys is a major economic market becoming ever more tech-related and drawn into the battle for convenience. Like any other tech-related industry, this battle is about industry dominance and, currently, that involves networked toys. Networked toys (...) aim to enhance convenience for children and parents alike. Increasingly difficult to resist, these convenient networked devices are also a societal game changer. Neatly nestled in a lacuna juris and surrounded by a lack of clinical evidence, networked toys raise complex ethical issues concerning human development. This article lays bare the regulatory nexus for networked toys and invites ethical thinking to fill the gap to ensure sufficient protection for all human developmental stages. Networked toys not only affect but also might interfere with child development. Therefore, the article initially summarises the four key psychological stages through which the neurological development of the human brain processes. Each of these stages involves vital windows for human development in cognitive, emotional and social dimensions. Missing any of these developmental windows changes an individual human for life. The article then takes a look at the two main legal frameworks protecting the stages of human development which are applicable to networked toys: First, the examination of the human rights framework with its major segments emanating from the fundamental rights to privacy for family and home, to a child's education as well as to personal data reveals the use of current networked toys as a shielded part of parenting which tends to be at odds with privacy and data protection requirements. Second, the product liability framework for toy manufacturers requires evidence-based causality for putting a child's safety at risk. Unfortunately, these legal frameworks fail to offer sufficient protection of the human developmental stages. There is a lacuna juris. Although networked toys involve the risk of negatively impacting human development in every dimension, clinical psychological studies are impossible to acquire as court evidence for product liability because they take too long to provide reliable data while exposing several generations of children to the examined risk in the process. Meanwhile the temptation of convenience continues to drive the industry and consumers of networked toys and devices, which are already impacting children of all age groups. Accepting this phenomenon as an element of cognitive dissonance in society and in science falls far short of an appropriate ethical balance. The need for creating such an ethical balance concerning networked toys is all the more imperative because even if the networked toy industry managed to eliminate all psychological risks for human development and every legal conflict with privacy and security, significant ethical and societal risks of networked toys remain due to inevitable technological bias. Against these mounting changes, it is suggested that only an ethical approach of interdisciplinary research and learning seems most promising to develop an appropriate equilibrium between the complex challenges posed by networked toys and the societal values at stake. (shrink)

Background Sharing of genomic data aims to make efficient use of limited resources, which may be particularly valuable in rare disease research. Adult research participants and parents of pediatric research participants have shown support for data sharing with protections, but little is known about adolescent attitudes on genomic privacy and data sharing.Methods In-depth interviews were conducted with 10 adolescents and 18 parents of children enrolled in a pediatric genomic research repository. Interview transcripts were analyzed for themes on attitudes (...) toward genomic privacy, restricted-access data sharing, and open-access data sharing. Findings in adolescent and parent participants were compared and contrasted.Results No adolescents endorsed privacy concerns for restricted-access data sharing. Both adolescents and parents saw value in data sharing for reaching the goals of research and discussed trust in institutions and researchers to protect their data and use it as intended. Adolescents were more likely than parents to accept open-access data sharing, including after risks were discussed.Conclusions In this exploratory study, adolescents and parents enrolled in a genomic research repository shared many attitudes about genomic data sharing, but adolescents were less concerned about privacy and more agreeable toward open-access data sharing. Future research is needed to investigate this hypothesis in expanded populations and settings, and to clarify whether adolescent attitudes change with age and experiences. (shrink)

In the late 1980s and early 1990s a number of key writers within sociology and anthropology criticised much of the existing research on children within the social sciences as 'adultist'. This has subsequently provoked attempts by academics to define new ways of working with , not on or for, children that have been characterised by a desire to define more mutuality between adult and children in research relationships and to identify new ways that researchers can engage with (...) young people. This paper aims to address some of the ethical complexities that this work has generated by focusing on five areas of ethical concern in relation to research with children in the environments of home and school: consent; access and structures of compliance; privacy and confidentiality; methodologies and issues of power; and dissemination and advocacy. While most of these issues are not necessarily unique to working with children, but underlie many research projects, they are refracted in particular ways in child-oriented research because of the unequal relationships of power between adults and children; the way that adults mediate access to children; the legal complexities of children's position as minors; and the particular nature of the environments—school and the parental home—in which researchers usually encounter young people. (shrink)

The definition above nicely encapsulates two of the intertwined meanings of ‘privacy’. In the first sense— physical seclusion —the level of privacy in modern developed societies is extraordinarily high by historical standards. We take it for granted that a bed in a hotel will be occupied by either one person or a couple—not by several strangers. At home, few of us expect to share either bed or bedroom with our children. In these and a variety of other (...) ways, increased physical privacy has come as a byproduct of increased wealth. (shrink)

Background: The right of children to have their voice heard has been accepted by researchers, and there are increasing numbers of qualitative health studies involving children. The ethical and methodological issues of including children in research have caused worldwide concerns, and many researchers have published articles sharing their own experiences. Objectives: To systematically review and synthesise experts’ opinions and experiences about ethical and methodological issues of including children in research, as well as related solution strategies. Research (...) design: The research design was a systematic review of opinion-based evidence, based on the guidelines by Joanna Briggs Institute. Methods: A search of five computerised databases has been conducted in April 2014 and 2271 articles were found. After screening the titles, abstracts, full texts and appraising the quality, 30 articles were finally included in the review. A meta-aggregative approach was applied in the data analysis and synthesis process. Ethical considerations: Ethical approval is not needed as it is a systematic review of published literature. Results: Six themes were identified, including evaluating potential risks and benefits, gaining access, obtaining informed consent/assent, protecting confidentiality and privacy, building rapport and collecting rich data. The similarities and differences between research involving children and that involving adults were indicated. Conclusion: All potential incentives should be justified when designing the study. Further studies need to research how to evaluate individual capacity of children and how to balance protecting children’s right to participate and their interests in the research. Cultural differences related to researching children in different regions should also be studied. (shrink)

This paper examines whether American parents legally violate their children’s privacy rights when they share embarrassing images of their children on social media without their children’s consent. My inquiry is motivated by recent reports that French authorities have warned French parents that they could face fines and imprisonment for such conduct, if their children sue them once their children turn 18. Where French privacy law is grounded in respect for dignity, thereby explaining the (...) French concerns for parental “over-sharing,” I show that there are three major legal roadblocks for such a case to succeed in US law. First, US privacy tort law largely only protects a person’s image where the person has a commercial interest in his or her image. Secondly, privacy tort laws are subject to constitutional constraints respecting the freedom of speech and press. Third, American courts are reluctant to erode parental authority, except in cases where extraordinary threats to children’s welfare exist. I argue that while existing privacy law in the US is inadequate to offer children legal remedy if their parents share their embarrassing images of them without their consent, the dignity-based concerns of the French should not be neglected. I consider a recent proposal to protect children’s privacy by extending to them the “right to be forgotten” online, but I identify problems in this proposal, and argue it is not a panacea to the over-sharing problem. I conclude by emphasizing our shared social responsibilities to protect children by teaching them about the importance of respecting one another’s privacy and dignity in the online context, and by setting examples as responsible users of internet technologies. (shrink)

This study considers the ethical implications of quoting children with particular emphasis on privacy and accuracy. A content analysis is used to examine how newspaper reporters quote children and teenagers. The study found that youths most likely are named when they are quoted in the newspaper. Teens who are 17 are the most likely to be quoted. Youths most frequently appear in feature stories, and they most frequently are treated as experts who provide the reporter with factual (...) information. The researcher argues that journalists should consider the vulnerabilities of youths before quoting them. (shrink)

Suppose that you have deeply personal information that you do not want to share. Further suppose that this information could help others, perhaps even saving their lives. Should you reveal the information or keep it secret? With the increasing prevalence of genetic testing, more and more people are finding themselves in this situation. Although a patient's genetic results are potentially relevant to all her biological family members, her first‐degree relatives—parents, children, and full siblings—are most likely to be affected. This (...) is especially true for genetic mutations—like those in the BRCA1 and BRCA2 genes—that are associated with a dramatically increased risk of disease. Fortunately, people are usually willing to share results with their at‐risk relatives. Occasionally, however, a patient refuses to disclose her findings to anyone outside her clinical team. Ethicists have written little on patients’ moral duties to their at‐risk relatives. Moreover, the few accounts that have been advanced are problematic. Some unnecessarily expose patients’ genetic information to relatives who are unlikely to benefit from it, and others fail to ensure that patients’ most vulnerable relatives are informed of their genetic risks. Patients’ duty to warn can be defended in a way that avoids these problems. I argue that the duty to share one's genetic results is grounded in the principle of rescue—the idea that one ought to prevent, reduce, or mitigate the risk of harm to another person when the expected harm is serious and the cost or risk to oneself is sufficiently moderate. When these two criteria are satisfied, a patient will most likely have a duty to warn. (shrink)

Since 2001 there has been a proliferation of commercially-available devices that observe children, track their movements and gather data about the routine choices that they make. At the same time, a growing number of databases in education, social care, health and youth justice store detailed information about children and facilitate its sharing between agencies. Some of this data is derived from in-depth personal assessment tools that are believed to ‘predict’ poor life outcomes such as criminality or social exclusion. (...) These developments are often presented as a means of keeping children safe or of intervening to deal with problems promptly, but they leave children with little privacy and create a new set of ethical and practical difficulties. There are dangers that overloading an already stretched social care service with low-level concerns will damage effective child protection work, while any insecurity in the systems potentially puts all children at increased risk of harm. Issues around consent to data-sharing have not been adequately addressed, but the reduction in confidentiality brought about by routine inter-agency information-sharing may deter children and their families from accessing services at all. We risk habituating children to a very high level of surveillance, and yet the possible effect of such widespread data-gathering on their personal development and future lives has not been considered. This paper lists some of the systems now in use or being planned, and outlines the potential risks that they pose to children’s safety and development. (shrink)

Carol Pateman has said that the public/private distinction is what feminism is all about. I tend to be sceptical about categorical pronouncements of this sort, but this book is a work of feminist political philosophy and the public/private distinction is what it is all about. It is motivated by the belief that we lack a philosophical conception of privacy suitable for a democracy; that feminism has exposed this lack; and that by combining feminist analysis with recent developments in political (...) philosophy, we can meet the philosophical and political need for a distinctively democratic conception of privacy. This book then, is an effort to sketch and defend such a conception of privacy. It aims to show that while some conceptions of privacy are inconsistent with democracy, others are not. Indeed, the book asserts, the belief that privacy can be valuable and that it can justify basic legal rights, is implicit in a democratic conception of persons as free and equal beings, and a democratic conception of politics as the self-governing, or regulating, activity of such individuals. Just as we can and should reject undemocratic conceptions of the suffrage in favour of democratic ones, so the book maintains, we can and must reject undemocratic conceptions of privacy in favour of ones that reflect the moral equality of men and women, and a commitment to democratic forms of government. Democracy is often described as government by and for the people. On such a view, democracy is a political regime which can be contrasted with monarchies or aristocracies on the one hand, or with theocracies and despotisms on the other. By contrast with the former, it is a form of government that views individuals as citizens and as equal members of the agency which authorizes the use of political power. By contrast with the latter, it is a form of government whose purposes and aims are established by the common interests of individuals, conceived as free and equal citizens. It is my contention that there is a plausible and attractive conception of privacy implicit in this view of democracy. Hence, I show that individuals have fundamental interests in privacy because privacy enables them to participate in politics freely and as the equal of others and, beyond that, to lead lives that they can each affirm to be reasonable, valuable and right. As I think that the ideal of democratic government is properly associated with this latter and broader goal, as well as with the former one, I call my account of privacy a democratic conception of privacy to signal its connection to a particular ideal of politics, and to the conception of persons that makes this ideal a convincing and inspiring one. As this is a work of political philosophy, however, no effort is made to address the legal merits of competing accounts of the right to privacy, or to resolve legal dispute about the content and justification of particular constitutional rights in the United States. Thus, while I use Supreme Court decisions and works of legal theory to illustrate and support my arguments, my use of these materials is governed by philosophical concerns and my conclusions, therefore, are strictly of a philosophical, not a legal, nature. The book is divided into four chapters, moving from feminist criticisms of privacy to an engagement with the philosophical literature on privacy and an account of the right to privacy in a democratic society. It proceeds as follows. In Chapter 1, I examine feminist concerns about privacy, through a close reading of the work of Catherine MacKinnon. I argue that MacKinnon persuasively shows that protection for privacy has frequently licensed the coercion and subjection of women, and that her arguments are supported both by feminist scholarship, key Supreme Court decisions, and by familiar conceptions of privacy and equality. However, I argue, these criticisms do not imply that privacy, like slavery, can never be democratic, because wholly inconsistent with the equality of individuals. Rather, feminist criticisms of privacy suggest that privacy, like the suffrage, can be necessary to the equality of women and can have a legitimate and important place in a democratic society. In Chapter 2, I examine the philosophical literature on privacy in light of the need to distinguish democratic from undemocratic accounts of its nature and value. This literature, I show, can help us to provide an account of privacy that is sensitive both to its inegalitarian aspects and to its importance for a democratic commitment to the freedom and equality of women. However, I argue, we cannot embrace current philosophical accounts of privacy uncritically, because to a striking extent they are, themselves, indifferent to the ways that privacy has licensed sexual inequality. Thus, in Chapter 2, I set about interpreting privacy as a moral and political value, in light of the strengths and weaknesses of the philosophical literature on privacy. Their strength is that they show that there are many reasons for caring about privacy, or many ways in which we might define it as a democratic value. Their weakness is that they tend to assume that we must choose amongst these different conceptions of privacy, in order to provide a philosophically cogent account of privacy. This, I show, is a mistake and one that can be remedied by remembering that a commitment to the equality of individuals requires us to acknowledge the reasonable differences in value and interest that may characterize their relations in a democracy. When we do so, I show, it is possible to define privacy in terms of its protection for self-definition, intimacy and confidentiality, without having to choose between the three of them. For individuals may legitimately disagree about the differences between privacy and other values, even while holding that privacy is a distinctive and important democratic good; and they may also disagree about the importance of privacy compared to other goods, such as equality, without denying that self-definition, intimacy and confidentiality can be morally and politically desirable in a democracy. In Chapter 2, therefore, I show that we can provide a philosophically adequate account of what privacy is and why it is valuable without supposing that privacy is always sexually egalitarian, or denying that it has a distinctive place in a democratic conception of value. Chapter 3 then extends this account of privacy, by considering the justification for a legal right to privacy. Just as we cannot provide a democratic conception of privacy without attending to the different, though equally valid, concerns that individuals may have so, I show, we cannot provide a democratic account of privacy rights if we forget that individuals can, quite reasonably, differ in the importance that they attach to privacy. The result, I argue, is that we can distinguish two main reasons for protecting privacy by right in a democracy, the one personal and the other political. Whereas the former emphasizes the importance of self-definition, intimacy and confidentiality to the personal freedom and equality of individuals, the latter emphasizes their importance to their prospects for voluntary and equal participation in the processes of collective choice and deliberation that define a democratic government. These two justifications of privacy rights reflect the fact that in a democracy the personal can be political, as feminists have insisted, but need not be in order to merit protection by right. Indeed, I argue, we can distinguish democratic from undemocratic accounts of the right to privacy in this way: for whilst the former acknowledge the variety of individuals’ interests in personal and collective choice, the latter either collapse the political into the personal, or assume that the legitimate claims of individuals are merely a function of collective needs, interests and values. Neither of these is consistent with familiar assumptions about the nature and justification of democratic institutions and rights, nor can they be reconciled with a commitment to sexual equality. Thus, I conclude, though the fact that there are different justifications for privacy rights in a democracy means that individuals may legitimately disagree over the content and justification of basic rights, it is wrong to confuse democratic debate with moral or conceptual confusion and so, arbitrarily, to truncate our accounts of privacy, equality and democracy. Finally, in Chapter 4, I test and develop these claims by examining the justification for abortion rights in a democracy. I argue that women have legitimate interests in abortion, as well as in bearing children, because they have fundamental, and legitimate, interests in privacy and equality. Although safe and legal abortion is necessary to sexual equality, as feminists claim, I show that we can provide a convincing and democratic account of women’s claims to abortion only if we recognize women’s interests in self-definition, intimacy and confidentiality. This is because women have both personal and political interests in abortion and we will be unable adequately to identify these if we overlook their interests in privacy. Indeed, I show, the difference between democratic and undemocratic solutions to conflict over abortion lies precisely in this: that whereas the former acknowledge the importance of privacy to the personal and political equality of women, the latter overlook or deny this. As a result, the latter license both mandated abortions, although women have legitimate interests in bearing and raising children, and prohibitions on abortion that cannot be reconciled with the freedom and equality of women. That is not to say that abortion is not a politically significant matter, or that we can resolve moral conflict over abortion simply by giving women a legal right to abortion. Neither is the case. However, the chapter shows, in a democracy individuals are entitled to make morally and politically controversial decisions for themselves not simply because this is expedient or useful, but because this is right. To overlook this feature of democracy, I argue, is to make moral and political conflict utterly intractable by democratic means. Thus, while controversy over abortion has been held to show that privacy is an incoherent and undemocratic right, this chapter argues that it shows the reverse: for controversy over abortion makes clear that privacy is essential to democracy, and why this should be so. This overview of the book, I hope, makes clear that its concerns are methodological as well as substantive, and moral as well as political. Thus, its central methodological claim is that we cannot reconcile privacy with the equality of individuals unless we make a deliberate effort to do so. Its central moral and political claims are that privacy is compatible with the equality of individuals, and sufficiently important to the latter that, in a democracy, the privacy of individuals merits legal protection by right. However, this summary of the book also exposes its limitations. Chief amongst these, I fear, is that it provides no sustained discussion of the place of property on a democratic conception of privacy, and that the latter, itself, is rather a broad preliminary sketch than a polished and detailed portrait. I regard these limits on the scope and arguments of the book as limitations, albeit ones that I hope to be able to remedy before too long.However, limited though the book clearly is, I believe that it lays out the essential components of a democratic conception of privacy and that, by analysing and synthesizing several diverse bodies of literature, it may help those who are interested in the relations between privacy, equality and democracy. (shrink)

While the balance between individual privacy and government monitoring or corporate surveillance has been a frequent topic across numerous disciplines, the issue of privacy within the family has been largely ignored in recent privacy debates. Yet privacy intrusions between parents and children or between adult partners or spouses can be just as profound as those found in the more “public spheres” of life. Popular access to increasingly sophisticated forms of electronic surveillance technologies has altered the (...) dynamics of family relationships. Monitoring, mediated and facilitated by practices of both covert and overt electronic surveillance, has changed the nature of privacy within the family. Parents are tracking children via GPS-enabled cell phone tracking software and are monitoring the Internet use of family members. Parents, siblings, and children are also posting information about their family members online, often without consent, and are creating social media profiles for others online. Prior scholarly work in philosophy and law has primarily addressed the privacy of children from third parties, usually commercial entities, and in the context of making medical decisions. Less attention has been directed at exploring a more general right of privacy of one family member against parents, siblings, children, or spouses. In this article, we do just that. We consider several moral rules that determine appropriate privacy boundaries within the family. More specifically, we will consider when overt or covert surveillance of a child, spouse, or partner by an adult family member is morally permitted. (shrink)

This paper addresses the question of delegation of morality to a machine, through a consideration of whether or not non-humans can be considered to be moral. The aspect of morality under consideration here is protection of privacy. The topic is introduced through two cases where there was a failure in sharing and retaining personal data protected by UK data protection law, with tragic consequences. In some sense this can be regarded as a failure in the process of delegating morality (...) to a computer database. In the UK, the issues that these cases raise have resulted in legislation designed to protect children which allows for the creation of a huge database for children. Paradoxically, we have the situation where we failed to use digital data in enforcing the law to protect children, yet we may now rely heavily on digital technologies to care for children. I draw on the work of Floridi, Sanders, Collins, Kusch, Latour and Akrich, a spectrum of work stretching from philosophy to sociology of technology and the “seamless web” or “actor–network” approach to studies of technology. Intentionality is considered, but not deemed necessary for meaningful moral behaviour. Floridi’s and Sanders’ concept of “distributed morality” accords with the network of agency characterized by actor–network approaches. The paper concludes that enfranchizing non-humans, in the shape of computer databases of personal data, as moral agents is not necessarily problematic but a balance of delegation of morality must be made between human and non-human actors. (shrink)

This paper is an analysis of the reasoning behind Megan’s Laws, which pertain to the notification of communities when convicted sex offenders move into the area, especially those offenders who have carried out crimes against children. Liberals tend to criticize these laws and often point to the value of privacy, which they claim would be unacceptably compromised by allowing them. Communitarians tend to endorse these laws and often point to the value of safety, which they claim would be (...) unacceptably compromised were it not for such laws. Both sides also rely on the notion of human dignity in support of their arguments. In this paper, I offer a common foundation for these values and suggest implications regarding the moral acceptability of Megan’s Laws. (shrink)

Background: Nurses providing 24-h care for the primary caregiver role have a number of significant roles to play in potential problems or conflicts associated with patient privacy and confidentiality. Research objectives: The objective of the study is to determine the prevailing attitudes towards gossip and the patient privacy practices of nurses working in paediatric units. Research design: A descriptive and cross-sectional design was used. A Descriptive Characteristics Form, a Gossip and Rumour Attitude Scale and a Patient Privacy (...) Scale were used to collect data. Participants and research context: A total of 112 paediatric nurses working in Turkey were included in the study. The response rate was 79.43%. Ethical considerations: Permission to conduct the study was obtained from the university’s ethics committee. The participants were informed of the aim of the study, and voluntary participation, anonymous response and confidentiality were explained to them. Findings: It was observed that nurses who had a higher education level, who were educated about patient privacy and who had read the patient rights regulations were more concerned about patient privacy. Negative correlations were found between the attitudes towards gossiping and the average scores on the patient confidentiality scale. Nurses who negatively defined gossip were more concerned about patient confidentiality. Discussion: Privacy is important for securing and protecting the personal, physical and psychological things that are important and special for patients. It is argued that obstacles to maintaining the privacy of hospitalized children and adolescents are a tolerant attitude towards gossiping, a lack of education about patient privacy and insufficient information about patient’s rights regulations and the Convention on the Rights of the Child. Conclusion: A nurse’s knowledge about the provision of patient confidentiality affects their privacy practices. For this reason, regular training sessions are recommended in hospitals. (shrink)

“Jane” is a mother of two, who was referred for psychotherapy. However, Jane had misgivings about engaging in the offered psychotherapy because of threats made by her domestically violent partner. The therapy sessions are audio recorded for the purpose of professional supervision and clinician reflective practices. Jane’s partner had threatened to subpoena the therapy recordings to legally separate Jane from her children. This article focuses on how three different parts of Jane’s multidisciplinary care exhibit different competing ethical priorities. Psychotherapeutic (...) clinicians private use of audio recordings of the therapy enhances patient care and their own professional development but with the risk of concealing possible unethical behaviour by either party. Medico-legal access to the therapy recordings preserves potentially relevant evidence in the pursuit of justice but risks the interpretation of the psychotherapeutic information outside of the therapeutic context. Policies advocating the inclusion of the therapy recordings in the medical record improves clinician accountability but risks harming the vulnerable patient due to threats to patient-therapist confidentiality. (shrink)

The issue of genetic inheritance, and particularly the contradictory rights of donors, recipients and donor offspring as to the disclosure of donor identities, is ethically complicated. Donors, donor offspring and parents of donor offspring may appeal to individual rights for confidentiality or disclosure within legal systems based on liberal rights discourse. This paper explores the ethical issues of non-disclosure of genetic inheritance by contrasting two principle models used to articulate the problem—liberal and communitarian ethical models. It argues that whilst the (...) latter provides a more constructive avenue to providing an ethics for donation than the competing and contradictory positions represented in a liberal rights approach, it raises issues of ethical judgement and authority that remain problematic. This ethical discussion is supported by a field study, funded by the Wellcome Trust, exploring the perceptions and experiences of recipients of donor sperm and their partners towards donor anonymity. The field study provides the empirical basis of an argument for making ethical judgements on the grounds of the community good rather than individual rights, that nevertheless recognises that both are inherently problematic. (shrink)

The phenomenon of ‘sharenting’, whereby a parent shares news and images of their child on social media, is of growing popularity in contemporary society. There is emerging research into children’s attitudes regarding sharenting and their associated concerns regarding privacy; however, this research most often involves young people who are approaching adulthood and are competent to participate. As a result, children who experience illness or disability are largely absent from current research, and as such, the moral permissibility of (...) a parent sharing their child’s illness journey on a public social media platform is largely unexplored. In this essay, I explore this issue by using the United NationsConvention on the Rights of the Childand Joel Feinberg’s principle of the child’s right to an open future as the basis of my argument: that children with illness and disability have the same rights as healthy children to privacy, identity and an open future and that publication of their illness on a social media platform violates these rights. I conclude that parents, as surrogate decision makers for their children, have the same responsibilities in protecting their child’s privacy as they do in making medical decisions on behalf of their children. As children of the social media generation approach adulthood, it is important to consider the rights of those who cannot speak for themselves and the ethical consequences of sharenting for children with illness and disability. (shrink)

IBERTARIANS hold that we have such duties as: not to directly and significantly harm others or their property, to keep agreements, to refrain from lying and certain other sorts of deception, and to compensate those whom we wrong. They also hold that we have a duty not to interfere with the liberty of others as long as they are fulfilling these duties. This duty of non-interference, they have thought, has protected the privacy of the home, and hence parental autonomy, (...) for it insures that others have no authority over or responsibility for (except in extreme circumstances) how parents raise or treat their children. (Why parental autonomy has been held to be protected by this duty of non—in_terference should be clear enough: for if (as is surely plausible) the main effect of that duty is to secure for adults the liberty (within limits) to live their private lives as they choose, then, on the natural assumption that the matter of how to raise one`s children falls within the domain of the private lives of adults, intervention by others, and in particular by the state, for the purpose of ensuring that children get raised in one way rather than another, would be impermissible.) More specifically to our purposes now, libertarians have supposed that the duty of non-interference leaves intact parents` perogative to decide if, and in what way, their children are to be educated. That this is crucial both to the degree and to the point of parental autonomy is clear enough. For it goes both to the matter of keeping out of the private home those who would provide education for children (if such is the wish of the parents), and to the matter of parents` entitlement to instill in their children the values that they (the parents) wish their children to have. Libertarians, however, have not had very much specific to say about the moral status of children. Are children owned by their parents? Do they have all the rights and duties that normal adults have'? Or is their status somewhere in between these extremes? Given that libertarians haven't said, there are different possible ways of extending traditional libertarian theory so as to cover children.. (shrink)

This article situates the movement for the legalisation of medicinal cannabis within the bigger picture of the impetus toward recreational cannabis legalisation. It describes the role played by children with epileptic syndromes in the medicinal cannabis law reform campaigns in the United Kingdom, and Queensland, New South Wales and Victoria in Australia. Noting the ‘rule of rescue’ and the prominence in media campaigns of children in Australian and English cases of parental disputation with clinicians about treatment for their (...) children, it reviews whether paediatric epilepsy is a suitable test case for the legalisation of medicinal cannabis. Taking into account the vested commercial interests of Big Cannabis, the current medico-scientific knowledge of the efficacy of medicinal cannabis in controlling paediatric epileptic seizures, and issues of dignity, health privacy, and the enduring digital footprints of media coverage, the article commences discussion about the ethics of the media, parents, politicians and entrepreneurial doctors utilising parents’ testimonials about the effects of medicinal cannabis as part of the cannabis law reform movement. (shrink)

Internet companies place a high priority on the safety of their services and on their corporate social responsibility towards protection of all users, especially younger ones. However, such efforts are undermined by the large numbers of children who circumvent age restrictions and lie about their age to gain access to such platforms. This paper deals with the ethical issues that arise in this not-so-hypothetical situation. Who, for instance, bears responsibility for children’s welfare in this context? Are parents/carers ethically (...) culpable in failing to be sufficiently vigilant or even facilitating their children’s social media use? Do industry providers do enough to enforce their own regulations and remove those users they know to be underage? How far does a duty of care extend? Regulation of age restrictions has, it is argued, created unintended consequences that heighten online dangers for young people. While children are inevitably drawn to new online spaces for entertainment and fun, should their rights to participate in the social world around them be curtailed to ensure their best interests and those of the wider community? Such questions now pose significant practical and ethical dilemmas for policy makers and other stakeholders involved in internet governance. It especially highlights the question of responsibility for protection of minors online and calls into question whether the current model of shared responsibility is working. (shrink)

This book explores the Janus-faced features of privacy, and looks at their implications for the control of personal information, for sexual and reproductive freedom, and for democratic politics. It asks what, if anything, is wrong with asking women to get licenses in order to have children, given that pregnancy and childbirth can seriously damage your health. It considers whether employers should be able to monitor the friendships and financial affairs of employees, and whether we are entitled to know (...) whenever someone rich, famous or powerful has cancer, or an adulterous affair. It considers whether we are entitled to privacy in public and, if so, what this might mean for the use of CCTV cameras, the treatment of the homeless and the provision of public facilities such as parks, libraries and lavatories. Above all, the book seeks to understand whether and, if so, why privacy is valuable in a democratic society, and what implications privacy has for the ways we see and treat each other. The ideas about privacy we have inherited from the past are marked by beliefs about what is desirable, realistic and possible which predate democratic government and, in some cases, predate constitutional government as well. Hence, this book argues, although privacy is an important democratic value, we can only realise that value if we use democratic ideas about the freedom, equality, security and rights of individuals to guide our understanding of privacy. (shrink)

Suppose we agree to reject the view that privacy has narrow scope and consequently is irrelevant to the constitutional privacy cases. We then have (at least) these two options: (1) We might further emphasize and draw out similarities between tort and constitutional privacy claims in order to develop a notion of privacy fundamental to informational and Fourth Amendment privacy concerns as well as the constitutional cases. We can cite examples indicating this is a promising position. (...) Consider consenting homosexuality conducted in one's home, for instance. We view it as a private matter, whether the state is seeking to regulate the behavior, or if others are attempting to gain or exploit information about it. I believe basic conceptual similarities between tort and constitutional interests can be identified by showing that there is a range of similar reasons for protecting both tort and constitutional privacy concerns. We might worry, however, that a comprehensive concept of privacy may be too general to be very useful, given that privacy violations can be so diverse, and can arise, for example, from misuse of confidential information, from conduct that is intrusive even if no information is gained or disclosed, from disturbance of an intimate relationship, or from disruption of various other important aspects of one's life.(2) We could concede that whatever “privacy” means in the tort and Fourth Amendment cases, it means something different in the constitutional cases. Nevertheless, we might take that “something else” seriously as a distinct but legitimate use of the term which is not “spurious” but is reflected in our ordinary language. This appears to me to be a fruitful alternative. After all, contrary to Henkin's view that tort privacy is “what most people mean by privacy,” the term is often used in contexts beyond informational privacy and clearly related to the interests at stake in the constitutional cases. Thus, for example, in a pamphlet explaining how to protect children by teaching them how to say “No!” to strangers without making them paranoid or antisocial, parents and teachers are told, Children have a right to privacy. Teach it. Reinforce it. One of the ways to help children prevent sexual assault is to encourage them to develop a sense of physical integrity. A sense that they have a right to their own body space and privacy. Just as we allow them to close the door when they use the bathroom, we must allow them to say no to any unwanted physical affection and touch. Flora Calao and Tamar Hosansky, “The Key to Having Fun is Being Safe: Teaching Personal Safety to Children,” The Safety and Fitness Exchange, 1123 Broadway, N.Y., N.Y. 10010. Unfortunately, the most obvious starting point for identifying the sense of private relevant to the constitutional cases is extremely worrisome. The Court itself has said ... only personal rights that can be deemed “fundamental”...are included in this guarantee of personal privacy...the right has some extension to activities relating to marriage...procreation...contraception...family relationships... and child rearing and education.Roe v. Wade, 410 U.S. 113 (1973).The difficulty, of course, is that little more is offered by way of explanation of which rights are “personal” or “fundamental” or both. Focusing on marriage makes Roe v. Wade difficult to understand given that Ms. Roe was unmarried, and attending only to family issues does not help us make sense of the Stanley case protecting one's right to view pornography in one's home. It is perhaps more problematic that decisions such as what color shoes to wear are reasonably viewed as personal, yet are far from fundamental enough to warrant protection. And regulations governing the draft and employment, for example, are not viewed as privacy invasions although they might be said to interfere with matters of one's life that are both fundamental and personal in the vague sense described.Before we give up in frustration, however, I would urge that we recall that even in tort law the notion of privacy has been evolving through a constellation of judgments. Although there is no fixed way of using the term which we then proceed to analyze, the concept of privacy has not in those cases been taken to be meaningless or empty. Similarly, there is reason to believe that the scope of a “personal and fundamental” notion of privacy relevant to the constitutional cases can be further delineated through a consideration of cases, especially since it seems to me that in many cases application of the term is clear and unproblematic. A decision to have a vasectomy, for example, can uncontroversially be said to be a personal and fundamental one, and it is in that sense private. We fail to acknowledge the personal significance in an individual's life of forcing or refusing him the operation if we deny that this important sense of privacy is relevant to such a decision merely because an interest in determining for oneself what one ought to do is also at risk.Of course, once it is settled that something is a private matter, it is a separate issue to decide whether or not, in some social context, an invasion of it can be justified. Thus, I would claim, a mandatory sterilization program for male recidivists or for those in a country suffering grave poverty and overpopulation does invade privacy, and the social or legal question is whether or not the invasion can, in the particular circumstances, be justified. Although all will agree that both individual and social interests must be balanced by moral philosophers as well as the courts, in conflicts we will not always agree on the weight to be accorded individual claims.I have not provided a constitutional defense for citing privacy as one right at stake in the constitutional privacy cases. Nor have I attempted to enter the debate about how strictly to interpret the Constitution. But if I am correct, then we can agree there is an important interest in privacy at issue in those cases without merely conflating privacy and autonomy or liberty, and can continue the process of marking out its boundaries. If we reach such agreement, we will have made considerable progress. Moreover, the implications of this view are significant. Current constitutional standards, controversial though they may be, require “strict scrutiny” for cases concerning “fundamental values,” and privacy has been judged to be one such value. Thus these privacy claims have a greater chance of being protected when they conflict with other rights or general interests than they would have if only liberty, or freedom from governmental interference, were involved. (shrink)

Empirical data from a large sample of Canadian youth aged 13 to 17 years suggest that, although the current privacy policy framework is having a positive effect on the extent to which young people are complying with the types of behavior promoted by adults as privacy protective, its primary focus on parental supervision is inadequate to fully protect children's online privacy. Respondents with high levels of either social interaction or identity play are more likely than those (...) with lower levels to divulge personal identifiers and display privacy-risky behavior, independent of their level of parental supervision. High levels of parental supervision, therefore, do not eliminate but merely reduce privacy-risky behaviors associated with social uses of the Internet. As such, parental supervision cannot adequately protect children who have integrated the Net most fully into their social lives, especially given the high premium that children place on the use of the Net to talk to friends and explore social roles. (shrink)

This article explores young children’s moral sensitivity regarding online disclosure. Drawing on psychological theory, moral sensitivity is defined as the ability to express and show moral consideration in terms of empathy, role-taking and pro-social moral reasoning. Twenty-five preadolescent children aged 9 to 11, all living in Belgium, were asked in focus group interviews to share their reflections about and experiences with self-disclosure and privacy in internet environments. The findings demonstrate that young children are capable of imagining (...) the moral consequences of disclosing personal information about oneself and about others. Their moral reflections are embedded in a more general concern of children’s vulnerability to other, more powerful information circulators in their social networks, such as older children, siblings, but also parents or the internet crowd. A strong sense of children’s entitlements to online privacy is articulated. Also, the decision of disclosing personal information about the other is carefully considered when the other is emotionally important to the children. (shrink)

No new ethical issue is created by reproductive technologies. The state should not intervene to suppress individual rights to take advantage of these technologies, including third party donations. Some individuals will view these technologies as the best available option for having and rearing children. The major values to be protected in public policy ought to be compassion, privacy and procreative rights.

This article is an attempt to highlights the importance of Beijing Principle of Artificial Intelligence for Children for preventing the Juvenile Delinquency. The article argues that the artificial intelligence products should protect children's privacy, promote children's physical and mental health, and control potential risks.

This paper analyzes court rulings on tissue samples as property and critiques objections that have been raised to the recognition of DNA samples as personal property. The cases are: Moore v. Regents of the University of California (1988, 1990), Greenberg v. Miami Children’s Research Institute (2003), and Washington University v.Catalona (2007). The paper argues that it is possible for the law to support both individual privacy and property rights in DNA, recognizing nevertheless that some unresolved questions remain, including (...) what exercising those rights means on a practical level. Finally, it offers suggestions for changes in law based on those considerations. (shrink)

Conducting research on adolescents raises a number of ethical issues not often confronted in research on younger children. In part, these differences are due to the fact that although assent is usually not an issue, given cognitive and social competencies, the life situations and behavior of youth make it more difficult to balance rights and privacy of the adolescents. In this article, the three ethical principles of beneficence, justice, and respect for persons are discussed in terms of their (...) application to the study of adolescents. Then, seven vignettes are presented to illustrate how these principles apply to real-life situations. How to balance the rights of adolescents and their parents is discussed, using adolescent girls and their parents for illustrative purposes. (shrink)

Written by epidemiologists, ethicists and legal scholars, this book provides an in-depth account of the moral problems that often confront epidemiologists, including both theoretical and practical issues. The first edition has sold almost three thousand copies since it was published in 1996. This edition is fully revised and includes three new chapters: Ethical Issues in Public Health Practice, Ethical Issues in Genetic Epidemiology, and Ethical Issues in International Health Research and Epidemiology. These chapters collectively address important developments of the past (...) decade. Three chapters from the first edition have also been reorganized: Ethicall Optimized Study Deisgns in Epidemiology, Ethical Issues in Epidemiologic Research with Children, and The Ethics of Epidemiologic Research with Older Populations. Instead of standing alone, these chapters have been integrated into chapters on informed consent, confidentiality and privacy protection, and community-based intervention studies. (shrink)

Wearable and mobile technology has advanced in leaps and bounds in the last decade with technological advances creating a role from enhancing healthy living to monitoring and treating disease. However, the discussion about the ethical use of such commercial technology in the community, especially in minors, is lacking behind. In this paper, we first summarize the major ethical concerns that arise from the usage of commercially available wearable technology in children, with a focus on smart watches, highlighting issues around (...) the consent process, mitigation of risk and potential confidentiality and privacy issues, as well as the potential for therapeutic misconceptions when used without medical advice. Then through a relevant thought experiment we move on to outline some further ethical concerns that are connected to the use of wearables by minors, to wit the issue of informed consent in the case of minors, forcing them to live in the spotlight, and compromising their right to an open future. We conclude with the view that mitigating potential pitfalls and enhancing the benefits of wearable technology especially for minors requires brave and comprehensive moral debates. (shrink)

The purpose of this paper is to analyse the Spanish mobile phone industry to determine how mobile phone companies and certain institutions can improve protection for children who use mobile phones. We carried out a multivariate statistical analysis using anonymous primary data from mobile phone companies, and institutions and associations that protect children, to compare these stakeholders’ opinions and to put forward solutions. We proved that, even though some European countries have made an effort to provide safer ICT (...) services, all stakeholders still need to cooperate and agree on solutions to the commercial problems associated with children using mobile phones. This can be done by signing codes of conduct. We found that even though some companies implement measures to protect children from accessing harmful content via their mobile phones, they do so for reasons of legal and not social responsibility. (shrink)

L’utilisation des réseaux socionumériques est sans doute l’activité en ligne qui enregistre actuellement la croissance la plus rapide parmi les jeunes. Cet article présente de nouvelles conclusions pan-européennes du projet EU Kids Online sur la façon dont les enfants et les jeunes exploitent les possibilités des réseaux peer-to-peer offertes par les réseaux socionumériques, en se basant sur une enquête menée auprès d’environ 25 000 jeunes . Globalement, 59 % des jeunes internautes européens âgés de 9 à 16 ans disposent de (...) leur propre profil sur un site de réseau social. Malgré des craintes, couramment exprimées, de voir la vie des jeunes entièrement exposée en public, la moitié ont moins de cinquante contacts, la plupart des contacts sont des personnes que l’enfant connaît déjà personnellement, et plus de deux tiers ont des profils privés ou partiellement privés. L’objectif de l’analyse est donc de comprendre quand et pourquoi certains enfants cherchent à élargir leurs cercles de contacts en ligne, et pourquoi certains préfèrent dévoiler leur intimité plutôt que protéger leur vie privée. L’étude montre que les différences démographiques entre les enfants, les facteurs culturels dans les différents pays, et les affordances spécifiques des réseaux socionumériques ont tous une influence sur l’élaboration des pratiques en ligne des enfants en matière de vie privée, d’identité et de connexions sociales.Social networking is arguably the fastest growing online activity among youth people. This article presents new pan-European findings from the EU Kids Online project on how children and young people navigate the peer-to-peer networking possibilities afforded by social networking sites, based on a survey of around 25,000 children . In all, 59 % of European 9-16 year olds who use the internet have their own social networking profile. Despite popular anxieties of lives lived indiscriminately in public, half have fewer than fifty contacts, most contacts are people already known to the child in person, and over two thirds have their profiles either private or partially private. The focus of the analysis, then, is to understand when and why some children seek wider circles of online contacts, and why some favour self-disclosure rather than privacy. Demographic differences among children, cultural factors across countries, and the specific affordances of social networking sites are all shown to make a difference in shaping the particularities of children’s online practices of privacy, identity and connection. (shrink)

Children continue to be overlooked as a topic of concern in discussions around the ethical use of people’s data and information. Where children are the subject of such discussions, the focus is often primarily on privacy concerns and consent relating to the use of their data. This paper highlights the unique challenges children face when it comes to online interferences with their decision-making, primarily due to their vulnerability, impressionability, the increased likelihood of disclosing personal information online, (...) and their developmental capacities. These traits allow for practices such as hypernudging to be executed on them more accurately and with more serious consequences, specifically by potentially undermining their autonomy. We argue that children are autonomous agents in the making and thus require additional special protections to ensure that the development of their autonomy is safeguarded. This means that measures should be taken to prohibit most forms of hypernudging children and thus ensure that they are protected from this powerful technique of digital manipulation. (shrink)

If one lives in a city and wants to be by oneself or have a private conversation with someone else, there are two ways to set about it: either one finds a place of solitude, such as one’s bedroom, or one finds a place crowded enough, public enough, that attention to each person dilutes so much so as to resemble a deserted refuge. Often, one can get more privacy in public places than in the most private of spaces. The (...) home is not always the ideal place to find privacy. Neighbours snoop, children ask questions, and family members judge. When the home suffocates privacy, the only escape is to go out, to the coffee shop, the public square. For centuries, city streets have been the true refuges of the solitaries, the overwhelmed, and the underprivileged. -/- Yet time and again we hear people arguing that we do not have any claim to privacy while on the streets because they are part of the so-called public sphere. The main objective of this chapter is to argue that privacy belongs as much in the streets as it does in the home. (shrink)

Recent developments in neuroscience create new opportunities for understanding the human brain. The power to do good, however, is also the power to harm, so scientific advances inevitably foster as many dystopian fears as utopian hopes. For instance, neuroscience lends itself to the fear that people will be forced to reveal thoughts and feelings which they would not have chosen to reveal, and of which they may be unaware. It also lends itself to the worry that people will be encouraged (...) to submit to medication or surgery which, even if otherwise beneficial, alters their brain in ways that undermine their identity and agency. As Kenneth Foster notes, neural implants can have surprising and unintended adverse effects, even when they help to mitigate the loss of bodily control associated with Parkinson’s disease, or help to provide hearing for children who would otherwise be profoundly deaf. While the risk of adverse outcomes are scarcely specific to neuroscience, he thinks that ‘These issues are perhaps more acute’ with the latter than with other medical interventions, ‘because they are intimately and fundamentally related to a person’s communication with the outside world’. [ 2006 196] -/- Neuroscience, like genomic science, then, is likely to create new ways of harming people. Many of these will involve violations of privacy. However, these are unlikely fundamentally to challenge the reasons to value privacy, or our ability to protect it in the foreseeable future. Rather, I would suggest, the major threat to privacy comes from the difficulty of determining its nature and value and when, if ever, efforts to protect it are justified. So I will start by examining some threats to privacy, and their implications for neuroscience, before turning to philosophical problems in understanding the nature and value of privacy, and the practical consequences of those philosophical difficulties. (shrink)

The goal of this project is to identify guidelines for privacy policies that children and teens can accurately interpret with relative ease. A three-pronged strategy was used to achieve this goal. First, an analysis of the relevant literature on reading was undertaken to identify the document features that affect comprehension. Second, focus groups were conducted to examine their experience and practices in the interpretation of privacy policies found on sites that have been identified as favorite kids’ sites. (...) Based on the results of the literature review and focus groups, a set of potential guidelines were identified. Finally, the efficacy of these guidelines was tested in the final phase of the research project. The result of this work is a set of 14 guidelines for the drafting of privacy policies that make a difference, by improving the comprehensibility of privacy policies encountered by Canadian children and teens as they surf the Net. (shrink)

After describing the Child Pornography Prevention Act (CPPA) of 1996, I argue that the Act ought to be significantly amended. The central objections to CPPA are (1) that it is so broad in its main proscriptions as to violate the First Amendment rights of adults; (2) that it altogether fails to provide minors and their legal guardians with the privacy rights needed to combat the harms associated with certain classes of prurient material on the Internet; and, (3) that the (...) actual rate of technological advance in home computing, and Congress' failure to appreciate how prurient material may be accessed, combined with CPPA to wrongfully expose an increasing number of individuals to possible prosecution and personal ruination. Several other objections are registered along the way, including one aimed at the draconian punishments the law metes out to violators. I close by offering the outlines of an amended version of the law that promises not to violate the rights of adults, that affords children and adults equal and effective protection against the very harmful practices the current law cannot eradicate, and that prescribes punishments that are consistent with the tolerance necessary to support a more democratic vision of the Internet. (shrink)

When people use online platforms to solicit funds from others for health-related needs, they are engaging in medical crowdfunding. This form of crowdfunding is growing in popularity, and its visibility is increasing as campaigns are commonly shared via social networking. A number of ethical issues have been raised about medical crowdfunding, one of which is that it introduces a number of privacy concerns. While campaigners are encouraged to share very personal details to encourage donations, the sharing of such details (...) may result in privacy losses for the beneficiary. Here, we explore the ways in which privacy can be threatened through the practice of medical crowdfunding by exploring campaigns for children with defined health needs scraped from the GoFundMe platform. We found specific privacy concerns related to the disclosure of private details about the beneficiary, the inclusion of images and the nature of the relationship between campaigner, funding recipient and beneficiary. For example, it was found that identifying personal and medical details about the beneficiary, including symptoms and treatment history, were often mentioned by campaigners. While the privacy concerns identified are problematic, they are also difficult to remedy given the strong financial incentive to crowdfund. However, crowdfunding platforms can enhance privacy protections by, for example, requiring those campaigning on behalf of child beneficiaries to ensure consent has been obtained from their guardians and providing additional guidelines for the inclusion of personal information in campaigns made on behalf of those not able to give their consent to the campaign. (shrink)

The Law is a grim, unsmiling thing, Not Justice, though. Justice is witty and whimsical and kind and caring.Rohinton Misuy, A Fine Balance;When the South Carolina Supreme Court upheld the conviction and twelve-year sentence of Regina McKnight, it affirmed that state 's commitment to bring the full force of the law to the punishment of pregnant women who use drugs. Prosecutors linked the delivery of Ms.McKnight 's stillborn baby to her use of cocaine, and argued successfully for a finding of (...) homicide by child abuse. The McKnight judgment follows the South Carolina Supreme Court decision in the case of Cornelia Whitner. Whitner was sentenced to prison for illegal drug use during pregnancy on the grounds that the viable fetus is a child under the state s criminal child endangerment statute.On the basis of constitutional concerns such as due process and privacy, worries that criminal prosecutions may thwart public policy goals such as keeping families together and promoting the health of women and children, and findings that legislatures did not intend to include the fetus in the scope of drug laws or child abuse and neglect laws, criminal prosecution has been resisted in most jurisdictions. (shrink)

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive (...) one of three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

BackgroundBiobanking biospecimens and consent are common practice in paediatric research. We need to explore children and young people’s (CYP) knowledge and perspectives around the use of and consent to biobanking. This will ensure meaningful informed consent can be obtained and improve current consent procedures.MethodsWe designed a survey, in co-production with CYP, collecting demographic data, views on biobanking, and consent using three scenarios: 1) prospective consent, 2) deferred consent, and 3) reconsent and assent at age of capacity. The survey was (...) disseminated via the Young Person’s Advisory Group North England (YPAGne) and participating CYP’s secondary schools. Data were analysed using a qualitative thematic approach by three independent reviewers (including CYP) to identify common themes. Data triangulation occurred independently by a fourth reviewer.ResultsOne hundred two CYP completed the survey. Most were between 16–18 years (63.7%, N = 65) and female (66.7%, N = 68). 72.3% had no prior knowledge of biobanking (N = 73).Acceptability of prospective consent for biobanking was high (91.2%, N = 93) with common themes: ‘altruism’, ‘potential benefits outweigh individual risk’, 'frugality', and ‘(in)convenience’.Deferred consent was also deemed acceptable in the large majority (84.3%, N = 86), with common themes: ‘altruism’, ‘body integrity’ and ‘sample frugality’. 76.5% preferred to reconsent when cognitively mature enough to give assent (N = 78), even if parental consent was previously in place. 79.2% wanted to be informed if their biobanked biospecimen is reused (N = 80).ConclusionProspective and deferred consent acceptability for biobanking is high among CYP in the UK. Altruism, frugality, body integrity, and privacy are the most important themes. Clear communication and justification are paramount to obtain consent. Any CYP with capacity should be part of the consenting procedure, if possible. (shrink)

Neuroethics to date has tended to focus on social and ethical implications of developments in brain science, especially in functional neuroimaging. Within clinical neuroethics, the emphasis has been on ethical issues in clinical neuroscience practice, including informed consent to neuroimaging; the development of ethical research protocols for functional magnetic resonance imaging especially, and especially in children; and the ethical clinical management of incidental findings. Within normative neuroethics, we have witnessed the more philosophical and/or social scientific study of the meanings (...) of developments in neuroscience, including concerns about the impact of neuroimaging on privacy, freedom of thought, moral culpability, and sense of self. In this piece, I argue for an expansion of neuroethical attention to the interface of neuroscience and psychiatry, where brain science meets the clinical sciences of the mind. My particular focus is the development of psychiatric classification systems. (shrink)

Dateline NBC’s “To Catch a Predator”(2006-08) involved NBC staff working with police and a watchdog group called “Perverted Justice” to televise “special intensity” arrests of men who were lured into meeting adult decoys posing as young children, presumably for a sexual encounter. As reality television, “To Catch a Predator” facilitates public shaming of those caught in front of the cameras, which distinguishes it from fictional representations. In one case, a Texas District Attorney, Louis Conradt, shot himself on film, unable (...) to bear the public humiliation of cameras airing his arrest. The show engenders conflicting responses: Did the show fulfill a public service by informing the public about real dangers and deterring potential predators, or was it an insensitive effort to garner ratings by taking advantage of human weaknesses? Is the sort of public shaming it imposes an appropriate form of punishment given the legitimate purposes of punishment? Did the show portray justice, or did it entrap victims? How did NBC’s working relationship with local police bear on the answer to that question? This paper addresses these questions and develops three objections to the show: that NBC in effect metes out unjust punishment; that it invades privacy; and that it entraps. (shrink)

Children’s unpleasant experiences with misuse of their personal information online is among the rapidly increasing online ‘risks’. Among these, four were chosen for this study: dealing with their own hacked accounts, dealing with others’ fake accounts, dealing with fake accounts impersonating them and sending rude messages on their behalf with the intent of damaging their reputation, and dealing with receiving rude messages from hacked accounts of friends were reported as most bothersome in EU Kids Online III. These four subtypes (...) of problematic situations related to privacy were strategically chosen to illustrate children’s coping responses to situations that are related but increasingly complex, distinctions related to whether situations involved peers or strangers, whether children were direct victims of hacked accounts, or recipients of unwelcomed or rude messages sent from fake profiles and/or hacked accounts. Furthermore, the four situations were chosen to develop a more inclusive coping typology for EU Kids Online data, which can span across different types of risks. This article relies heavily on theoretical work put forward by research on coping with general and specific stressors but integrates approaches to children’s dealing with online issues relevant for online safety measures. (shrink)

is an unusual phenomenon. The concern with rights different citizens have in different societies is legal rather than philosophical. It is frequently somewhat a technical matter for jurisprudence to decide exactly what rights a citizen has in a given situation and how he might best exercise his rights. Often, to be sure, the legal technicalities involve matters of principle, and if so these should be made explicit. For this, too, there is a need less for philosophy and more for jurisprudence, (...) for detailed legal study. For example, the problems concerning interests of third parties - related to the questions of when is a third party an aggrieved person, so-called, and what are the rights of the aggrieved third party - have been taken up, in the sixties, by diverse federal courts of the United States, with the aim of increasing individual rights when these are encroached upon by public agencies.1 Although this may call for much philosophical commentary, it is clearly more a legal matter than a philosophical concern. Even the broadly philosophical question of rights within a legal system requires a greater degree of legal than philosophical considerations. Recently H.L.A. Hart, the foremost living legal philosopher, has cited Sir Henry Maine (1891) and William Warwick Buckland (1950) approvingly to support his view that even "Roman law never achieved a clear concept of a legal right." 2 It is not clear to a philosopher what "a clear concept of legal rights" might be, and a philosopher like Hannah Arendt never. concerned herself with this matter when she expressed her admiration for the rights of a Roman citizen to his privacy.3 Regardless of whether we admire or deplore this, we can agree that at least in principle a Roman citizen had more rights and prerogatives within his family than any modern civilized law would ever permit. A philosopher with only a modicum of sensitivity can say that although Rome was not a democracy, and even though in Rome the rights of women and children (not to mention slaves) were not recognized, the rights of citizens to privacy and to be free of the need ever to prove their innocence have nevertheless become the foundation stones of modern liberal individualistic democracy.. (shrink)