The Convention on Human Rights and Biomedicine confuses respect for a person's right to self-determination with concern about protecting human beings generally. In a legal document, this mixture of deontological with utilitarian considerations undermines what it should preserve: respect for human dignity as the foundation of modern rights-based democracies. Falling prey to the ambiguity of freedom, the Convention blurs the dividing line between morality and the law. The document should be remedied through distinguishing fundamental rights from social 'rights', persons (...) as entitled to the right to self-determination from born humans as entitled to the right to life and from members of the human species as entitled to the morally respo-nsible care of voting majorities. For the cultivating of the required responsibility, the conditions for an adequate public debate should be secured. (shrink)

Eric Olson criticizes Lynne Baker’s constitution account of persons on the grounds that personhood couldn’t be ontologically significant as nothing new comes into existence with the acquisition of thought. He claims that for something coming to function as a thinker is no more ontologically significant than something coming to function as a locomotor when a motor is added to it. He levels two related charges that there’s no principled answer about when and where constitution takes place rather than an (...) already existing object just acquiring new properties. I’ll argue that none of these objections are problems for understanding person to be a substantial kind. (shrink)

The recent alleged doping case of the figure skater Kamila Valieva at the Winter Olympic Games in Beijing 2022 dramatically raised the issue of the protection of minors in anti-doping policy. We firstly present the literature on doping in relation to minors. Secondly, we present WADA’s Protected Person (PP) concept and its implications. Thirdly, we analyse the WADA Code’s purpose and the vulnerability of minors under the Code, and fourthly, we identify the real threats from which minors should be (...) protected by analysing the ineffective PP concept, and showing how it cannot be a real protection. We explain how preventing one threat can generate another, thus converting minor athletes from victims into suspects. We conclude by stressing the necessity for further research, and we indicate our future research direction, towards the development of a much wider concept of protection, and its application into sporting contexts. (shrink)

In this research we apply the Theory of Planned Behavior (TPB) to study decisions related to information privacy protection. A TPB-based model was proposed to investigate whether organization-based self-esteem and perceived deindividuation can be employed to measure the strength of the perceived behavioral control construct. In addition, we examined if the addition of a causal path linking subjective norms to attitudes and another causal path linking organization-based self-esteem to subjective norms enhanced our research model's predicting power. Our study shows that (...) information systems (IS) professionals' intentions to protect personal information privacy are influenced by their attitudes, subjective norms, perceived deindividuation, and organization-based self-esteem. It further shows that attitudes are influenced by subjective norms, which, in turn, are influenced by organization-based self-esteem. (shrink)

Public policies designed to regulate the use of information technology to protect personal data have been based on different theoretical assumptions in different states, depending on whether the problem is defined in technological, civil libertarian, or bureaucratic terms. However, the rapid development, dispersal, and decentralization of information technology have facilitated a range of new surveillance practices that have in turn rendered the approaches of the 1960s and 1970s obsolete. The networking of the postindustrial state will require a reconceptualization of the (...) dynamic relationship between organizational practices and information technology and a more comprehensive appreciation of the privacy problem. With the call for the development of a more coherent information policy in a number of countries, there is evidence that policymakers have been taking this more holistic view. (shrink)

In a compelling article, Peterson, Karlawish and Largent argue that supported decision-making is preferable to substitute decision-making for people with dynamic impairments. We fully...

The aim of the article is to explain the relationship between the ethical evaluation of scientific research involving personal data and the assessment of compliance with data protection law. The article presents the mutual relationship between the protection of personal data and scientific activity from a dogmatic perspective, the legal regulation of the processing of personal data in scientific research, and the so-called research exceptions that apply when data are processed for scientific research. It also covers the importance of meeting (...) the ethical requirements of scientific research in order to profit from the indicated exceptions. Finally, it provides a comparison between the ethical and the legal systems of personal data protection in research (objectives, criteria, authorities, and procedures). (shrink)

The use of epithets was a fundamental component of Greek polytheism. The present study brings attention to a small subgroup of such divine bynames, referred to as individual epithets because they stem from the names of mortal individuals. The function of these epithets is to designate a deity specifically concerned with the individual in question, thereby providing a close relationship and personal benefits for the eponymous worshipper and his or her close kin. The article exemplifies the phenomenon through the investigation (...) of a goddess Isis Aphrodite Dikaia identified in Hellenistic Delos. Through the epithet Dikaia, two Athenian brothers, Dikaios and Asklepiades, sons of Dikaios, intimately tie the deity to themselves and their family. It is moreover proposed that a positioning of the epithet in its historical and physical context furthers our understanding of its origins and significance.L’usage des épithètes était une composante fondamentale du polythéisme grec. Cet article se penche sur un petit groupe de surnoms de ce genre, que l’on appelle des épithètes individuelles, dans la mesure où elles dérivent du nom d’individus mortels. Ces épithètes ont pour fonction de montrer qu’une divinité est particulièrement concernée par l’individu en question, fournissant dès lors une relation étroite et des bienfaits personnels pour le fidèle éponyme et sa famille proche. L’étude illustre le phénomène en investigant la déesse Isis Aphrodite Dikaia que l’on rencontre dans la Délos hellénistique. Par l’épithète Dikaia, deux frères athéniens, Dikaios et Asklépiadès, fils de Dikaios, associent intimement la divinité à eux-mêmes et à leur famille. Il est en outre proposé qu’un replacement de l’épithète dans son contexte historique et physique approfondit notre compréhension de ses origines et de sa signification. (shrink)

The containment measures imposed during the first COVID-19 outbreak required economic, social, and behavioral changes to minimize the spread of the coronavirus. Some studies have focused on how personality predicts distinct patterns of adherence to protective measures with psychopathic and antisocial traits predicting reduced engagement in such measures. In this study we extended previous findings by analyzing how boldness, meanness, and disinhibition psychopathic traits relate with both risk perceptions and protective behaviors during the first COVID-19 outbreak. A sample of 194 (...) individuals engaged in the survey, were assessed for psychopathic traits with the Triarchic Psychopathy Measure, and completed a COVID-19 survey targeting risk perceptions and frequency of protective behaviors. Overall results show that boldness predicts reduced estimate of COVID-19 spread, reduced perceived risk of becoming infected, reduced state anxiety toward COVID-19, and reduced frequency of protective behaviors. Exploratory mediation models suggest that risk perceptions are not significant mediators of the association between psychopathic traits and reduced engagement in protective behaviors. Our results unveil that psychopathic traits affect risk perceptions and the propensity to engage in protective measures, emphasizing the need to accommodate these personality features in the public health strategy to control the COVID-19 spread. (shrink)

Conceptualisations of vulnerability of research participants in the international standards of ethics of research involving humans underwent a shift from a group-membership (categorical) to an individual-oriented (analytic) approach to vulnerability. However, the categorical view has not been jettisoned completely, and so its role needs to be examined or explained. It is argued in this chapter that a restricted use of the categorical approach can be justified if protection of vulnerable research participants is seen against the background of the dynamics of (...) study design, review and implementation, and if recognition and protection of participants with vulnerabilities is construed as a process in which researchers and ethics review bodies are involved rather than as a labelling device. From this perspective, the suitability of approach to conceptualisation of vulnerability depends on the kind and scope of the available information on participants. The process of study design, ethics review, and implementation involves different users of the ethics standards at different stages in the lifetime of a project: researchers and members of ethics review bodies. The concepts of individual vulnerability (in the analytic approach) and that of group-membership vulnerability (in the categorical approach) can play their protective roles complementarily in the process of identification of vulnerabilities of participants and protection of participants with vulnerabilities. (shrink)

Social media provides a protective space for LGBTQ adolescents to share their experiences and self-disclosures. Digital platforms such as X (Twitter) offer an environment that is distinct and more open compared to the conservative attitudes commonly found in traditional societies. However, not all social media platforms provide a safe space for LGBTQ adolescents to openly share their identities and personal experiences, highlighting an urgent need to create safer and more educational digital spaces. This study employs a qualitative research design with (...) a phenomenological approach to understand the self-disclosure experiences of LGBTQ adolescents on the X platform. The findings reveal that the X platform plays a crucial role in supporting the self-disclosure of LGBTQ adolescents in Indonesia. The motivations for self-disclosure include the desire to acquire and disseminate knowledge, personal expression, self-acceptance, and involvement in LGBTQ movements and groups. The feedback received in self-disclosure encompasses positive responses such as acceptance and recognition, as well as negative responses such as rejection and exclusion. The consequences of self-disclosure are divided into internal benefits, such as self-actualization and increased self-esteem, and external benefits such as social connections and recognition from the community. This study provides insights for social media platform developers to create more inclusive and supportive environments, despite limitations related to sample size and other factors that may influence the results. Future research is recommended to expand the sample size and explore the long-term impacts of online community support on the well-being of LGBTQ adolescents. (shrink)

The protection of national minorities forms a constituent part of the international protection of human rights. General human rights treaties (the International Covenant on Civil and Political Rights, the International Covenant on Economic, Social and Cultural Rights, the Convention for the Protection of Human Rights and Fundamental Freedoms and others) create guarantees for the protection of persons belonging to national minorities on the basis of individual human rights. Although the mentioned treaties are not specifically devoted for the protection of (...) national minorities, it is important to underline that non-minorities treaties establish articles of special relevance for persons belonging to national minorities. Non-minorities treaties on the basis of non-discrimination and equality oblige the contracting states to ensure equal treatment of persons, including those belonging to national minorities. It may be noticed that non-minorities treaties provide the protection for persons belonging to national minorities indirectly through the interpretation of the ambit of general human rights. The core question is whether the protection granted on the basis of general human rights is sufficient for the effective protection of persons belonging to national minorities. The aim of the article is to analyze general and specialized international legal grounds of special significance for persons belonging to national minorities in order to determine the particularities of the protection granted for them. The conclusion is drawn that general human rights alone do not effectively protect national minorities: general human rights contribute to the protection of persons belonging to national minorities as a supplement element that inextricably interrelates with specialized rights together comprising the protection devoted to national minorities. (shrink)

Because research involving human subjects exposes people to risk not always for their own potential benefit, the question arises as to how best ensure that: research participants are protected and benefited according to the highest ethical standards, while, on the other hand, researchers are protected and free to do research that will produce clinical advances for both research participants and society as a whole.The balancing of the risk to research participants versus the benefits derived from the research is (...) performed in many counrries by a system for the protection of human research participants that is laid out in national laws and regulations. In the United States, this system is based on principles emanating from the Nuremberg Code, the World Medical Association Declaration of Helsinki,and the report of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (shrink)

Since the 1970s and more rigorously since the 1990s, many countries have regulated data protection and privacy laws in order to ensure the safety and privacy of personal data. First, a comparison is made of different acts regarding genetic information that are in force in the EU, the USA, and China. In Turkey, changes were adopted only recently following intense debates. This study aims to explore the experts’ opinions on the regulations of the health information systems, data security, privacy, and (...) confidentiality in Turkey, with a particular focus on genetic data, which is more sensitive than other health data as it is a permanent identifier that is inherited to next of kin and shared with other family members. Two focus groups with 18 experts and stakeholders were conducted, discussing topics such as central data collection, legalized data sharing, and the management of genetic information in health information systems. The article concludes that the new Turkish personal data protection law is problematic as the frame of collectible data is wide-ranging, and the exceptions are extensive. Specific laws or articles dedicated to genetic data that also overlook the dimension of discrimination based on genetic differences in Turkey should be taken into consideration. In broader terms, it is intended to put up for discussion that in addition to ethical aspects, economic aspects and legal aspects of health should be included in the discussion to be carried out within the framework of socio-political analyses with culture-specific approaches and cross-culture boundaries simultaneously. (shrink)

The World Health Organization has in the last decade identified mental health as a priority for global health promotion and international development, to be targeted through promulgation of evidence-based medical practices, health systems reform, and respect for human rights. Yet these overlapping strategies are marked by tensions as the historical primacy of expert-led initiatives is increasingly subject to challenge by new social movements — in particular, disabled persons’ organizations. These tensions come into focus upon situating the WHO’s contributions to (...) the analysis of global mental health in light of the negotiation and early stages of implementation of the Convention on the Rights of Persons with Disabilities, particularly as it applies to persons with mental disabilities. (shrink)

Coronavirus disease 2019 (COVID‐19) has placed significant strain on United States’ health care and health care providers. While most Americans were sheltering in place, nurses headed to work. Many lacked adequate personal protective equipment (PPE), increasing the risk of becoming infected or infecting others. Some health care organizations were not transparent with their nurses; many nurses were gagged from speaking up about the conditions in their workplaces. This study used a descriptive phenomenological design to describe the lived experience of acute (...) care nurses working with limited access to PPE during the COVID‐19 pandemic. Unstructured interviews were conducted with 28 acute care nurses via telephone, WebEx, and Zoom. Data were analyzed using thematic analysis. The major theme, emotional roller coaster, describes the varied intense emotions the nurses experienced during the early weeks of the pandemic, encompassing eight subthemes: scared and afraid, sense of isolation, anger, betrayal, overwhelmed and exhausted, grief, helpless and at a loss, and denial. Other themes include: self‐care, ‘hoping for the best’, ‘nurses are not invincible’, and ‘I feel lucky’. The high levels of stress and mental assault resulting from the COVID‐19 crisis call for early stress assessment of nurses and provision of psychological intervention to mitigate lasting psychological trauma. (shrink)

In recent years, due to factors such as rising sea levels, several island nations such as Maldives, Tuvalu, Kiribati, and the Marshall Islands are in danger of disappearing completely. When the land of an island country disappeared, the human rights protection of Environmentally Displaced Persons in the migration process and the possible loss of their unique culture, language, and lifestyle have aroused great concern. We call such Environmentally Displaced Persons as EDPs. This study selects the EDPs’ data of (...) 241 countries or regions from 2008 to 2018, establishes an ARIMA model, and predicts the future population of EDPs. By combining the influencing factors of cultural loss, the risk assessment model of cultural loss is established to evaluate the possibility of cultural loss during the migration process of EDPs. We have established a Bayesian Network and a Fault Tree Model to demonstrate the improvement brought about by the implementation of policy recommendations from both qualitative and quantitative perspectives and use the method of fault tree analysis to illustrate the importance of policies from the degree of probability reduction after policy changes. Finally, based on the above model establishment and data analysis, corresponding countermeasures are proposed to protect EDPs’ human rights from being violated and their culture will not be lost. (shrink)

Personal data protection is an ethical issue. In this study we analyzed how research ethics committees (RECs) and data protection officers (DPOs) handle personal data protection issues in research protocols. We conducted a mixed-methods study. We included heads (or delegated representatives) of RECs and DPOs from universities and public research institutes in Croatia. The participants provided information about data protection issues in research and their mutual collaboration on those issues through structured interviews that contained closed and open-ended questions. Qualitative description (...) was used to analyze open-ended questions. The results showed that 55% of the REC representatives were not aware who was DPO in their institution. Among RECs, 65% never contacted the DPO. There were 61% of RECs who reported that they received no training from the organization on personal data protection. When asked about barriers to personal data protection in their institutions, 26% of REC members highlighted the lack of a clear protocol for assessing personal data protection issues, while 30% of DPOs mentioned lack of knowledge among researchers about personal data. In conclusion, we found that when it came to protecting personal data in research protocols, RECs and DPOs hardly ever worked together. When developing future personal data protection policies for academic and scientific research institutions, it is essential that RECs and DPOs should collaborate and both continue to expand/update their knowledge on personal data protection procedures. (shrink)

I have argued elsewhere that in past history, freedom of speech, whether granted to few or many, was granted as bestowing some important benefit. John Stuart Mill, for example, in On Liberty, saw it as enabling us to learn from each other through discussion. By the test of benefit, I here argue that social media that are funded through trade in our personal data with advertisers, including propagandists, cannot claim to be supporting free speech. We lose our freedoms, if the (...) personal data we entrust to online social media are used to target us with information, or disinformation, tailored as persuasive to different personalities, in order to maximize revenue from advertisers or propagandists. Among the serious consequences described, particularly dangerous because of its effect on democracy, is the use of such targeted advertisements to swing voting campaigns. Control is needed both of the social media and of any political parties that pay social media for differential targeting of voters based on personality. Using UK government documents, I recommend legislation for reform and enforcement. (shrink)

In terms of psychotransgressionism, personality is a network of five equipollent psychons, the content of which determines the personality’s functioning. The strength and power of the individual psychons underlies the tendency to undertake transgressive actions. In this study, we hypothesized that transgressive spouses are characterized by greater potential strength, greater power of cognitive, instrumental, motivational, emotional, and personal psychons than protective spouses. We operationalized all psychons, created the appropriate research tools, and then studied married couples. Using the Transgression Scale developed (...) by Studenski, we found a group of spouses with higher levels of transgression, and a group of spouses with lower levels of transgression. Transgressive wives are characterized by better knowledge about their husbands’ operational sphere, and are more aware of personal beliefs than protective wives. Similarly, transgressive husbands have greater knowledge of their wives’ operational sphere, stronger cognitive needs, and weaker personal needs than protective husbands. Transgressive husbands are characterized by a positive affective shift and have a greater awareness of personal beliefs than protective husbands. The potential brought into interpersonal relationships by transgressive spouses may create a climate conducive to building a satisfying marital relationship. (shrink)

This paper undertakes a comparative legal study to analyze the challenges of privacy and personal data protection posed by Artificial Intelligence embedded in Robots, and to offer policy suggestions. After identifying the benefits from various AI usages and the risks posed by AI-related technologies, I then analyze legal frameworks and relevant discussions in the EU, USA, Canada, and Japan, and further consider the efforts of Privacy by Design originating in Ontario, Canada. While various AI usages provide great convenience, many issues, (...) including profiling, discriminatory decisions, lack of transparency, and impeding consent, have emerged. The unpredictability arising from the AI machine learning function poses further difficulties, which have only been partially addressed by legal frameworks in the aforementioned jurisdictions. However, analyzing the relevant discussions yielded several suggestions. The first priority is adopting PbD as the most flexible, soft-legal, and preferable approach toward AI-oriented issues. Implementing PbD will protect individual privacy and personal data without specific efforts, and achieve both the development of AI and the advancement of privacy and personal data protection. Technical measures that can adapt to an individual’s dynamic choices according to the “context” should be further developed. Furthermore, alternative technical measures, including those to solve the “algorithmic black box” or achieve differential privacy, warrant thorough examination. If AI surpasses human intelligence, a terminating function, such as a “kill switch” will be the last resort to preserve individual choice. Despite numerous difficulties, we must prepare for the coming AI-prevalent society by taking a flexible approach. (shrink)

Healthcare professionals’ capacity to protect themselves, while caring for infected patients during an infectious disease pandemic, depends on their ability to practise universal precautions. In turn, universal precautions rely on the availability of personal protective equipment (PPE). During the SARS-CoV2 outbreak many healthcare workers across the globe have been reluctant to provide patient care because crucial PPE components are in short supply. The lack of such equipment during the pandemic was not a result of careful resource allocation decisions in the (...) global north, where the short supply could be explained through their high cost. Instead, they were the result of democratically elected governments prioritising low tax regimes over an adequate resourcing of their healthcare delivery systems. Such decisions were made despite global health experts warning about the high probability of pandemics like SARS-CoV2 occurring during our lifetimes. Avoidable allocation decisions by democratically elected political leaders resulted in a lack of sufficient PPE for healthcare professionals. After discussing and discounting various ethical arguments in support of a professional obligation to treat, even without or with suboptimal PPE, I conclude that these policy decisions were sufficiently grave that they provide a sound ethical rationale to justify healthcare workers’ refusal to provide care to infected patients. (shrink)

The COVID-19 pandemic has exacerbated inequalities, including among the healthcare workforce. Based on recent literature and drawing on our experiences of working in operating theatres and critical care in the UK’s National Health Service during the pandemic, we review the role of personal protective equipment and consider the ethical implications of its design, availability and provision at a time of unprecedented demand. Several important inequalities have emerged, driven by factors such as individuals purchasing their own personal protective equipment, inconsistencies between (...) guidelines issued by different agencies and organisations, and the standardised design and procurement of equipment required to protect a diverse healthcare workforce. These, we suggest, have resulted largely because of a lack of appropriate pandemic planning and coordination, as well as insufficient appreciation of the significance of equipment design for the healthcare setting. As with many aspects of the pandemic, personal protective equipment has created and revealed inequalities driven by economics, gender, ethnicity and professional influence, creating a division between the ‘haves’ and ‘have-nots’ of personal protective equipment. As the healthcare workforce continues to cope with ongoing waves of COVID-19, and with the prospect of more pandemics in the future, it is vital that these inequalities are urgently addressed, both through academic analysis and practical action. All data relevant to the study are included in the article. (shrink)

Confidentiality is a central bioethical principle governing the provider–patient relationship. Dating back to Hippocrates, new laws have interpreted it for the age of precision medicine and electronic medical records. This is where the discussion of privacy and technology often ends in the scientific health literature when Internet-related technologies have made privacy a much more complex challenge with broad psychological and clinical implications. Beyond the recognised moral duty to protect patients’ health information, clinicians should now advocate a basic right to privacy (...) as a means to safeguard psychological health. The article reviews empirical research into the functions of privacy, the implications for psychological development and the resigned sentiment taking hold regarding the ability to control personal data. The article concludes with a call for legislative, educational and research steps to readjust the equilibrium between the individual and ‘Big Data’. (shrink)

In The New Eugenics: Selective Breeding in an Era of Reproductive Technologies, Judith Daar advocates for increased access to assisted reproductive technologies and minimizes concerns about the potential “eugenic logic” of some procreative choices. Although Daar’s goal of expanded access is laudable, her argument suggests an unresolved tension between the moral equality of persons and individual reproductive freedom. Exploring that tension, this paper argues that efforts to expand access to ART must still grapple with the “eugenic mentality” of quality (...) control that some forms of reproductive and genetic technologies enable. (shrink)

Arguments about constitutional and personal rights often invoke the concept of privacy. In the United States it has been said that the constitution "embodies a promise that a certain private sphere of individual liberty will be kept largely beyond the reach of government". A number of formulae has been invoked in an attempt to define the sphere of constitutional privacy. They include: Fundamental rights of interests; personal decisions and issues; important questions intimately affecting private lives; and decisions affecting education, child-rearing, (...) marriage and contraception.Canadian and Europian courts have resorted to balancing formulae and to proportionality to set the limits to liberty guarantees. All of them need, however, an implied general theory of liberty such as that propounded by Mill , since privacy is a special sub-category of liberty.Privacy claims are made not only against the State, but in tort law relations between individuals, or between individuals and organisations such as the Press. Proposals for legislation to protect personal privacy encompass two different types of claim. One relates to physical intrusion: the other to proprietary rights over information of certain kinds. It is questionable whether general legislation to establish a statutory tort of breach of privacy is defensible. It may even be dangerous and be exploitable to protect government information. A public interest defence is essential. That throws the balancing role back on the courts, but they cannot rely on any obvious social consensus in weighing the interests at issue. In der Auseinandersetzung über subjektive Rechte, die von einer Verfassung garantiert sind oder deren Verletzung privatrechtliche Ansprüche auslöst, berufen sich viele Stimmen auf das Konzept der Privatsphäre. Nach einer in den Vereinigten Staaten vertretenen These liegt der amerikanischen Verfassung "das Versprechen zugrunde, daß die Privatsphäre, d.i. eine bestimmte Sphäre individueller Freiheit, im großen und ganzen außerhalb des Zugriffs des Staates liegt". Wie läßt sich rechtlich präzisieren, was diese verfassungsrechtlich garantierte Privatsphäre eigentlich einschließt? Eine Reihe von Antworten, die auf diese Frage gegeben werden, bezeichnen als vom Begriff der Privatsphäre erfaßt a) fundamentale Rechte oder Interessen, b) persönliche Probleme oder Entscheidungen, c) wesentliche Fragen, die das Privatleben ganz existenziell berühren, d) Entscheidungen, die die Erziehung und Ausbildung von Kindern, Empfängnisverhütung und Eheschließung betreffen. Einige dieser Formeln enthalten Elemente eines logischen Zirkels, da sie bei dem Versuch, die Privatsphäre näher zu umschreiben, ihrerseits selbst den Ausdruck "privat" benutzen. Andere sind entweder offensichtlich zu weit oder zu eng oder sonst schlechterdings ungenügend. Darüber hinaus ist es nicht klar, wann bei den subjektiven Rechten, die als fundamental bezeichnet werden, Ausnahmen gemacht werden. Ein Beispiel liefert die US-amerikanische Entscheidung Bowers v. Hardwick. (shrink)

The actions of pregnant women can cause harm to their future children. However, even if the possible harm is serious and likely to occur, the law will generally not intervene. A pregnant woman is an autonomous person who is entitled to make her own decisions. A fetus in-utero has no legal right to protection. In striking contrast, the child, if born alive, may sue for injury in-utero; and the child is entitled to be protected by being removed from her (...) parents if necessary for her protection. Indeed, there is a legal obligation for health professionals to report suspected harm, and for authorities to protect the child's wellbeing. We ask whether such contradictory responses are justified. Should the law intervene where a pregnant woman's actions risk serious and preventable fetal injury? The argument for legal intervention to protect a fetus is sometimes linked to the concept of ‘fetal personhood’ and the moral status of the fetus. In this article we will suggest that even if the fetus is not regarded as a separate person, and does not have the legal or moral status of a child, indeed, even if the fetus is regarded as having no legal or moral status, there is an ethical and legal case for intervening to prevent serious harm to a future child. We examine the arguments for and against intervention on behalf of the future child, drawing on the example of excessive maternal alcohol intake. (shrink)

This paper explores some key discrepancies between two sets of normative requirements applicable to the research use of personal data and human biological materials: the data protection regime which follows the application of the European Union General Data Protection Regulation, and the Declaration of Helsinki, CIOMS guidelines and other research ethics regulations. One source of this controversy is that the GDPR requires consent to process personal data to be clear, concise, specific and granular, freely given and revocable and therefore has (...) challenged the concept of ‘broad consent’, which has been widely applied in the context of biobanking. Another source of controversy is the interplay between regulations of research ethics and protection of personal data related to the secondary use of personal data and biological materials. In this case, the GDPR ‘research condition’ provides an alternative to re-consent for the use of previously collected personal data and biological materials. Although the mentioned controversies have been raised in the legal literature, they have not been explicitly addressed from the research ethics perspective. Should consent be regarded as a priority legal basis for personal data processing in health data research? Can broad consent still be a suitable legal ground for biobanking? What should be the role of research ethics provisions that differ from the GDPR standards, and what should be the role and function of research ethics committees in the changing environment of health data research? These are the ongoing controversies to be explored in the paper. (shrink)

This article is the result of an international research between law and ethics scholars from Universities in France and Switzerland, who have been closely collaborating with technical experts on the design and use of information and communication technologies in the fields of human health and security. The interdisciplinary approach is a unique feature and guarantees important new insights in the social, ethical and legal implications of these technologies for the individual and society as a whole. Its aim is to shed (...) light on the tension between secrecy and transparency in the digital era. A special focus is put from the perspectives of psychology, medical ethics and European law on the contradiction between individuals’ motivations for consented processing of personal data and their fears about unknown disclosure, transferal and sharing of personal data via information and communication technologies (named the “privacy paradox”). Potential benefits and harms for the individual and society resulting from the use of computers, mobile phones, the Internet and social media are being discussed. Furthermore, the authors point out the ethical and legal limitations inherent to the processing of personal data in a democratic society governed by the rule of law. Finally, they seek to demonstrate that the impact of information and communication technology use on the individuals’ well-being, the latter being closely correlated with a high level of fundamental rights protection in Europe, is a promising feature of the socalled “e-democracy” as a new way to collectively attribute meaning to large-scale online actions, motivations and ideas. (shrink)

Once upon a time, they managed to bring Neverland into the bedrooms; they were seen as the heroes of a new era. However, as heroes always tend to walk a fine line between good and evil, it does not come as a surprise that a decade later the perception has dramatically changed; the fairy tale turned into a nightmare. Are Internet Service Providers (ISPs) no more than data-guzzling monsters that need to be tamed? In November, the European Commission published a (...) “Comprehensive approach on personal data protection in the European Union” which seems to nod approval. The approach seeks to strengthen the individual’s rights regarding the use of data by ISPs. The Commission notes that children deserve specific protection in this context due to the fact that their awareness of risks and consequences is usually underdeveloped. Both a general principle of transparent processing and specific obligations for data controllers regarding the type of information to be provided and the modalities for providing it had to be taken into account. Not only legal but also self-regulatory initiatives should contribute to a better enforcement of data protection rules. This approach is both applauded and heavily criticized by the European Data Protection Supervisor. In particular, he argues that children’s particular interests have not been sufficiently addressed presenting a long list of suggestions for improvement including specific provisions against behavioral advertising, the exclusion of some data categories, an age threshold or special requirements on the issue of informed consent and a reinforcement of data controllers’ accountability. Is there really a need for a new magic formula? This paper reviews the current options for addressing the challenges of the use of personal data of minors by ISPs. (shrink)

The combination of decreased genotyping costs and prolific social media use is fueling a personal genetic testing industry in which consumers purchase and interact with genetic risk information online. Consumers and their genetic risk profiles are protected in some respects by the 2008 federal Genetic Information Nondiscrimination Act (GINA), which forbids the discriminatory use of genetic information by employers and health insurers; however, practical and technical limitations undermine its enforceability, given the everyday practices of online social networking and its (...) impact on the workplace. In the Web 2.0 era, employers in most states can legally search about job candidates and employees online, probing social networking sites for personal information that might bear on hiring and employment decisions. We examine GINA's protections for online sharing of genetic information as well as its limitations, and propose policy recommendations to address current gaps that leave employees? genetic information vulnerable in a Web-based world. (shrink)

Much biomedical research cannot be performed without recruiting human subjects. Increasingly, volunteer registries are being developed to assist researchers with this challenging task. Yet, volunteer registries raise confidentiality issues. Having recently developed a registry of volunteers, the authors searched for normative guidance on how to implement the principle of confidentiality. The authors found that the protection of confidentiality in registries are based on the 10 key elements which are elaborated in detail in the Canadian Standards Association Model Code. This paper (...) describes how these 10 detailed key principles can be used during the developmental stages of volunteer registries. (shrink)

The standard approach to protecting privacy in healthcare aims to control access to personal information. We cannot regain control of information after it has been shared, so we must restrict access from the start. This ‘control’ conception of privacy conflicts with data-intensive initiatives like precision medicine and learning health systems, as they require patients to give up significant control of their information. Without adequate alternatives to the control-based approach, such data-intensive programmes appear to require a loss of privacy. This paper (...) argues that the control view of privacy is shortsighted and overlooks important ways to protect health information even when widely shared. To prepare for a world where we no longer control our data, we must pursue three alternative strategies: obfuscate health data, penalise the misuse of health data and improve transparency around who shares our data and for what purposes. Prioritising these strategies is necessary when health data are widely shared both within and outside of the health system. (shrink)

The processing of sensitive information in the health field is subject to rigorous standards that guarantee the protection of information confidentiality. Recently, the Italian Data Protection Authority (Garante per la Protezione dei Dati Personali) stated their formal opinion on a standard procedure in dental offices involving the submission of a questionnaire that includes the patient's health status. HIV infection status is included on the form. The Authority has stated that all health data collection must be in accordance with the current (...) Italian normative framework for personal data protection and respect the patient's freedom. This freedom allows the patient to decide, in a conscious and responsible way, whether to share health information with health personnel without experiencing any prejudice in the provision of healthcare requested. Moreover, data collection must be relevant and cannot exceed the principles of treatment goals with reference to the specific care of the concerned person. However, the need for recording information regarding HIV infection at the first appointment, regardless of the clinical intervention or therapeutic plan that needs to be conducted, should not alter the standard protection measures of the healthcare staff. In fact, these measures are adopted for every patient. (shrink)

One of the fundamental questions of legal philosophy and theory is what it means to have a legal right, i.e. who can be considered a legal right holder. With the parallel development of bioethical doctrine, this question about rights holders is becoming increasingly relevant, raising the question of whether rights holders can be animals, trees, foetuses, future generations or machines (artificial intelligence). This question also applies to the dead, where the difficult question of the end of life and the final (...) occurrence of death also arises. By critically elaborating the positions of contemporary legal theorists in the context of two key theories of rights, the Will Theory and the Interest Theory and their mutual differences, the paper attempts to offer an account of the dead as potential right holders. In this context, the above legal theory elaboration is reflectively considered in the context of civil law doctrine of legal rights, as one of the fundamental areas within the general part of civil law. The legal subjectivity of the deceased is also observed in the field of (post-mortem protection) personality rights, but also in a pragmatic way in relation to recent domestic case law practice, as well as the case law practice of the European Court of Human Rights, where interesting legal issues have arisen that imply the question of the deceased as legal right holders. (shrink)

PurposeThe purpose of this paper is to analyse incidents of personal information leakage in Japan based on Japanese socio‐cultural characteristics of information privacy and to consider how best to develop an effective personal information protection policy that conforms to Japanese situations as well as to the global requirement of personal information protection.Design/methodology/approachAfter describing recent incidents of personal information leakage in Japan, the paper examines the defects of the Act on Protection of Personal Information that permit these incidents to continue. Subsequently, (...) these incidents and the responses of the Japanese people in a manner that reflects the unique Japanese socio‐cultural characteristics of information privacy are analysed. Finally, the paper proposes a revision of APPI that conforms to these Japanese socio‐cultural characteristics as well as to the global requirement for personal information protection.FindingsPersonal information leakage cases and social responses in Japan reflect three Japanese socio‐cultural characteristics: Uchi/Soto awareness, insular collectivism and Hon'ne/Tatemae tradition. An effective law protecting personal information in Japan's cultural environment cannot be made simply by copying the privacy protection laws in western nations. Instead, legal protection of personal information should be drafted that reflects and takes into account these socio‐cultural characteristics.Originality/valueThis paper conducts analysis of incidents of personal information leakage in Japan based on Japanese socio‐cultural characteristics. A revision of APPI is proposed on the basis of the analysis. The paper's analysis and proposal would provide a good clue to develop effective measures to protect personal information and the right to information privacy in the global, multicultural information society. (shrink)

The corona pandemic altered many traditional and historical norms of society and law. COVID-19 created a humanitarian crisis in some parts of globe, while pandemic privacy and civil liberties were under threat all over world. To combat the deadly virus, individual liberty and equality were compromised. This paper focuses on how India’s health problem has compromised people’s right to privacy. It will highlight how strict executive policies led to the creation of a massive surveillance system in the name of combating (...) the COVID-19 pandemic, as well as how the absence of any policy or legal framework led to the exclusion of individuals and their families who were suspected of having the virus or caring for those who were infected with the deadly virus. The paper uses case studies and data collected from primary as well as secondary sources. The authors will also point out how the absence of privacy regulation puts millions of citizens’ private information at risk of being compromised or exploited against their will. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing in mind the (...) Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

Once common, therapeutic privilege—the practice whereby a physician withholds diagnostic or prognostic information from a patient intending to protect the patient—is now generally seen as unethical. However, instances of therapeutic privilege are common in some areas of clinical psychiatry. We describe therapeutic privilege in the context of borderline personality disorder, discuss the implications of diagnostic non-disclosure on integrated care and offer recommendations to promote diagnostic disclosure for this patient population. There are no data in this work.

The paper has three parts. First, a survey and analysis is given ofthe structure of individual rights in the recent EU Directive ondata protection. It is argued that at the core of this structure isan unexplicated notion of what the data subject can `reasonablyexpect' concerning the further processing of information about himor herself. In the second part of the paper it is argued thattheories of privacy popular among philosophers are not able to shed much light on the issues treated in (...) the Directive, whichare, arguably, among the central problems pertaining to theprotection of individual rights in the information society. Inthe third part of the paper, some suggestions are made for a richerphilosophical theory of data protection and privacy. It is arguedthat this account is better suited to the task of characterizingthe central issues raised by the Directive. (shrink)