The Article analyses how one of the basic consumer rights – the right to information – is regulated in the European Commission Proposal for a Directive of the European Parliament and of the Council on consumer rights (hereinafter referred to as the Proposal): the article analyses trends of regulation of the consumers’ right to receive information; problems related to the scope of provided information and the issue of consumer standard that should be used in evaluating (...) the sufficiency of provided information and transparency of contract terms. Furthermore, additional possibilities to improve the consumer right to receive information at the national level are shortly discussed. The regulation of the consumer right to receive information established in the Proposal may imply a new era in the regulation of the B2C relations, where the aim to ensure high common level of consumer protection is opposed against the aim to ensure the balance of interests of consumers and business. Such „slight“ conversion of the aims may impact the application of legal norms regulating consumer right to information and the scope of the disclosure obligation of the business, while reducing the level of the consumer protection. (shrink)

The discourse about traceability in food chains focused on traceability as means towards the end of managing health risks. This discourse witnessed a call to broaden traceability to accommodate consumer concerns about foods that are not related to health. This call envisions the development of ethical traceability. This paper presents a justification of ethical traceability. The argument is couched in liberal distinctions, since the call for ethical traceability is based on intuitions about consumer rights to informed choice. The paper suggests (...) that two versions of ethical traceability find justification. The first version of ethical traceability entails that governments ensure that all consumers are provided with foods that respect some threshold level of, e.g., animal welfare that is supported by an overlapping consensus. The second version of ethical traceability entails that food producers provide consumers with products, and sufficient information about these products, that are relevant for reasonable, non-superficial values that are not supported by an overlapping consensus. Governments should facilitate this in the sense that consumers are not provided with misinformation about characteristics of foods that are relevant for reasonable, non-superficial values that are not supported by an overlapping consensus. (shrink)

The idea that citizens have a right to receive information that is relevant for their suitable exercise of political rights and liberties is well established in democratic societies. However, this right has never been systematically analyzed, thus remaining a blurry concept. This article tackles this conceptual gap by conceptualizing citizens’ right to information. After reviewing previous approaches to this idea, I locate citizens’ right to information on the map of communication rights, and put (...) forward a systematic framework for both justifying and analyzing it. This framework focuses on this right’s grounds, its function, its holders, its content, and its correlative duties. Although the conceptualization offered here will be incomplete, it will be enough to distinguish the general concept of citizens’ right to information from both its specific conceptions and from the other two best-known rights of the public: freedom of information and the public’s right to know. (shrink)

PurposeThe purpose of this paper is to study the evolution of Freedom of Information/Right to Information from an international perspective and analyse it as an indispensable tool for good governance through the use of information and communication technologies with special reference to India.Design/methodology/approachThis study examines the worldwide occurrence of Right to Information with reference to International Covenants, the genesis of RTI Act in India and the use of ICT in India as a tool for (...) empowering the citizen's.FindingsThe study demonstrates that RTI has far reaching impact and it clearly contributes to a better and informed citizenry however the use of ICT in India can further facilitate the access of such records.Research limitations/implicationsThe study focuses on the genesis of RTI from an international perspective but the use of ICT for further facilitating the use of RTI is limited to Indian context.Practical implicationsThe paper will outline a detailed analysis on the present usage of ICT and the initiatives taken for facilitating information dissemination and further provide suggestions for the benefit of civil society towards good governance.Originality/valueThe study is the first to address the issue of the implementation of right to information act through the use of ICT and also suggests methodology for its further improvement. Also, the study comprehends the genesis of RTI both from the international as well as Indian perspective. (shrink)

OBJECTIVES: To analyse the attitudes of medical personnel towards terminally ill patients and their right to be fully informed. DESIGN: Self-administered questionnaire composed of 56 closed questions. SETTING: Three general hospitals and eleven health centres in Granada (Spain). The sample comprised 168 doctors and 207 nurses. RESULTS: A high percentage of medical personnel (24.1%) do not think that informing the terminally ill would help them face their illness with greater serenity. Eighty-four per cent think the patient's own home is (...) the best place to die: 8.9% of the subjects questioned state that the would not like to be informed of an incurable illness. CONCLUSION: In our opinion any information given should depend on the patient's personality, the stage of the illness and family circumstances. Our study confirms that a hospital is not the ideal environment for attending to the needs of the terminally ill and their families. (shrink)

This study uses conversation analysis to investigate how participants in Korean conversations negotiate their epistemic rights to information by deploying alternate evidential markers. The participants mutually monitor each other’s different or changing epistemic rights to the information and routinely shift their choice of evidential markers to —tamye to redistribute their epistemic rights. By manipulating the turn-taking and sequence organizations which underlie the —tamye evidential marker, the participants can claim or downgrade their epistemic rights to the information. The (...) findings of this study contribute to research on evidentiality by providing an interactional perspective which takes the orientation of the participants in actual interactions as the starting point of analysis. The study illustrates how evidential markers serve to negotiate the relationships among the speaker, the hearer, and the information in the course of the interaction rather than merely function to reflect an implicit contract or territory between the speaker’s and the hearer’s information. (shrink)

Subjective rights enjoy limited import in Kelsenian theory for whereas the concept of duty underlies every legal norm, that of rights is merely possible and only emerges when the imposition of the sanction attached to the breach of the duty is made dependent upon a subject's will to bring legal action. The presence of secondary norms establishing certain duties of medical professionals on informed consent displays the existence of correlative reflex rights of patients. Yet, together with secondary norms, Western legal (...) systems typically institute norms of competence enabling patients to take legal action when those duties correlative to their reflex right to informed consent have been infringed. Thus, informed consent constitutes a set of subjective legal positions of patients and medical professionals. Despite its excessive formalism and questionable neutrality, the Kelsenian approach permits to define and clearly distinguish patients' genuine rights from mere aspirations devoid of legal basis. (shrink)

I consider the foundational issue of whether we have a right to information that is fundamental in being independent of other rights and general in protecting all information. To this end, I distinguish two kinds of morally relevant value an entity might have, i.e. intrinsic and instrumental value, and explain the role that each has in determining whether a person has a fundamental moral interest in that entity. Next, I argue that, by itself, the claim that some (...) entity E has an informative nature does not justify believing that E has either intrinsic value or instrumental value. Accordingly, I conclude that whatever protection morality provides to our interests in information, such protection does not rise to the level of a right that is either general in the sense that it applies to all information or fundamental in the sense that it is not derived from other more basic rights. (shrink)

PurposeThe purpose of this paper is to reconsider the concept of the right to information privacy and to propose, from a Japanese perspective, a revised conception of this right that is suitable for the modern information society.Design/methodology/approachFirst, the concept of privacy and personal information protection in the information society is briefly explained. After that, confused situations in Japan caused by the enforcement of Act on the Protection of Personal Information are described followed by (...) the analysis of the Japanese socio‐cultural circumstances surrounding privacy. Based on these, the effectiveness of the concept of the right to information privacy in the Japanese socio‐cultural and economic context is examined and the need to rethink the concept of the right to information privacy discussed. Finally, a revised conception of the right is proposed.FindingsIn view of the circumstances in Japan, the concept of the right to information privacy, defined as “an individual's right to control the circulation of information relating to him/herself”, as well as the Organisation for Economic Co‐operation and Development's eight principles already become outdated in today's sophisticated information‐communication society. There is a need to control/restrict use of personal information so that individuals' autonomy and freedom is ensured in the current situation and to revise the concept of the right to information privacy based on this idea.Originality/valueThis paper proposes a revision of the concept of the right to information privacy focused on control of, not access to, use of personal information. The revised concept is defined so that individuals' autonomy and freedom is ensured even in the “informational transparent” society. (shrink)

Major topics: the nature and moral stutus of animals, animal experimentation and alternatives, use of animals for food, and environmental ethics. A bibliography of works historically important to animal rights and a list of 181 animal rights and animal welfare organizations worldwide enhance the book's usefulness. Annotation copyrighted by Book News, Inc., Portland, OR.

Der Artikel untersucht einen Fall, in dem jemand von einem Mediziner die Offenlegung der Resultate eines Gentests seines verstorbenen Vaters verlangt. Die vorläufigen Ergebnisse der Studie des Mediziners lassen auf ein um 10% erhöhtes Risiko für Darmkrebs in Verbindung mit der Beschaffenheit eines der Gene des Vaters schließen. Dieser Fall wirft Fragen im Hinblick auf zumindest drei unterschiedliche Aspekte auf: die Offenlegung von Informationen mit geringem Aussagewert; die Offenlegung von Untersuchungsergebnissen gegenüber unmittelbaren Abkömmlingen der Testperson; und die Offenlegung von Untersuchungsergebnissen (...) nach dem Tod der Testperson.Der vorliegende Artikel kommt zu folgenden Ergebnissen: Testresultate mit geringem Aussagewert sollten den Testpersonen auf Anforderung zugänglich gemacht werden; unter bestimmten Umständen sollten genetische Informationen Familienmitgliedern gegenüber offengelegt werden, auch ohne die Zustimmung der Testperson; obwohl die Rechte und Verantwortlichkeiten im Zusammenhang mit der Verpflichtung, das Vertrauensverhältnis gegenüber dem Patienten zu bewahren, normalerweise mit dem Tod des Patienten nicht verringert oder gar aufgehoben werden, könnten im vorliegenden Fall doch bestimmte Faktoren zu einer Verschiebung der Balance hin zu einer Offenlegung der Information führen; und gibt es zu diesem Fall eine Reihe von Varianten, in denen der Mediziner wegen eines Zusammenspiels zwischen den genannten Faktoren berechtigterweise die Testresultate des Vaters dem Sohn gegenüber offenlegen kann. This article explores a case in which a son asks researchers to disclose his deceased father's genetic test results. The preliminary results of the researchers' study suggest a 10% increase in risk of colon cancer associated with the presence of gene. The case raises issues related to at least three distinct policy areas: the disclosure of/ow-value information, the disclosure of research results to immediate biological relatives of research subjects, and the disclosure of research results after the death of a research subject. The article concludes the following: low-value test results should be made available upon request to research subjects, in some circumstances genetic information may be revealed to family members without the subjects' consent, while the rights and responsibilities associated with the obligation to maintain subjects' confidentiality may not generally diminish or end upon their death, certain factors in this case may shift that balance in favor of disclosure, and in this case, because of the interplay between the factors, there are a number of scenarios in which the researchers could justifiably disclose the father's test results to the son. (shrink)

New developments in genetics are rapidly spreading over the Western World. The standards of clinical practice differ however according to local value- and health-care systems. In this article a short survey is given of Dutch developments in this field. An effort is made to explain the philosophical and ethical background of Dutch policy by concentrating on autonomy, responsibility and the right not to know.

Unresolved disagreements on issues of access, censorship, and privacy within the information profession can be dangerous when entrepreneurial interests outweigh the public good and as corporations anticipate financial gain from placing limitations on information retrieval and use. The information profession can benefit from a grounding of its core values in a robust moral framework that can coherently place demands on interested parties. We argue that grounding the core values of privacy and ubiquitous access to information in (...) a needs-based theory of rights is most suitable within the unique context of the information profession. (shrink)

Background There is little dispute that the ideal moral standard for surgical informed consent calls for surgeons to carry out a disclosure dialogue with patients before they sign the informed consent form. This narrative study is the first to link patient experiences regarding the disclosure dialogue with patient-surgeon trust, central to effective recuperation and higher adherence. Methods Informants were 12 Israelis, aged 29–81, who underwent life-saving surgeries. A snowball sampling was used to locate participants in their initial recovery process upon (...) discharge. Results Our empirical evidence indicates an infringement of patients’ right to receive an adequate disclosure dialogue that respects their autonomy. More than half of the participants signed the informed consent form with no disclosure dialogue, and thus felt anxious, deceived and lost their trust in surgeons. Surgeons nullified the meaning of informed consent rather than promoted participants’ moral agency and dignity. Discussion Similarity among jarring experiences of participants led us to contend that the conduct of nullifying surgical informed consent does not stem solely from constraints of time and resources, but may reflect an underlying paradox preserving this conduct and leading to objectification of patients and persisting in paternalism. We propose a multi-phase data-driven model for informed consent that attends to patients needs and facilitates patient trust in surgeons. Conclusions Patient experiences attest to the infringement of a patient’s right to respect for autonomy. In order to meet the prima facie right of respect for autonomy, moral agency and dignity, physicians ought to respect patient’s needs. It is now time to renew efforts to avoid negligent disclosure and implement a patient-centered model of informed consent. (shrink)

An Indian Court recently awarded 50,000 rupees damages to a couple who gave birth to their fourth daughter. The couple were mistakenly told they were carrying a male fetus. The doctor mistook a section of the umbilical cord for a penis. The husband said: “We are already struggling to raise three children. This was a big sacrifice for us to have a fourth child. We would have had an abortion if we had known it was a girl”. The cost of (...) damages amounted to the dowry they would have to pay at the time of their daughter's marriage.This is a fictional case. But the cases of Nicholas Perruche and Lionel1 are not fictional. According to reports, damages were paid to these children on the basis of what the media has described as a “right not to be born”. Is there a “right not to be born?” Was it right to compensate Nicholas Perruche for being born with congenital rubella and Lionel for being born with Down's syndrome?HARM TO THE CHILDWhat constitutes a right is a complex question. On one interpretation, rights protect interests. This implies that a right not to be born would exist if a child had an interest in not being born. Is it ever in a child's interests not to have been born? If it were, this might imply the child is better off dead than alive, as the Collective against Handiphobia claim. Is it better to be dead than have Down's syndrome?Some people do believe that Down's syndrome constitutes a life not worth living.2 But this view seems false. Children with Down's syndrome can and often do lead happy and worthwhile lives. After all, we do not suggest that other animals have a right not to be born or a life not worth …. (shrink)

The right to withdraw from research without penalty is well established around the world. However, it has been challenged in some corners of bioethics based on concerns about various harms—to participants, to scientific integrity, and to research bystanders—that may stem from withdrawal. These concerns have become particularly salient in emerging debates about the ethics of controlled human infection (CHI) studies in which participants are intentionally infected with pathogens, often in inpatient settings with extensive follow‐up. In this article, I provide (...) support for preserving the right to withdraw from research without penalty and demonstrate that it is also typically justified in the specific context of CHI studies. The right is well aligned with individual freedoms outside the research setting, where autonomous individuals are permitted to engage in behaviors that will foreseeably cause them harm; where they cannot be compelled to satisfy contracts for their services, nor penalized for failure to do so; and where their behavior is not constrained by public health authorities except in extreme circumstances. These freedoms are supported by U.S. law, as well as by ethical analysis that is more globally relevant. The problems associated with the right to withdraw, however, remain. The best approach to addressing them is not to restrict the right but rather to avoid initiating research when withdrawal would be especially problematic. If research proceeds, steps can still be taken to minimize participant withdrawal without infringing the right. Investigators can avoid participant surprise through informed consent focused on a study’s most burdensome aspects and promote study completion through financial incentives. Should participants nonetheless seek to withdraw, investigators may attempt to persuade them not to do so by encouraging consideration of the range of potential harms that may result. Researchers conducting CHI studies and other research from which withdrawal might be especially problematic should prepare for the possibility of participant withdrawal, respect participant requests to withdraw without penalty, and incorporate various measures to avoid such requests. (shrink)

As a profession, librarians have proclaimed an ethical duty to ensure access to information for all people. However, many barriers exist to fulfilling this duty, including varying levels of education and technology around the globe, the cost of obtaining research information, and the concentration of scholarly publishing in English. This article outlines these barriers, concluding with a call to action for librarians to advocate for multilingual Open Access, to foster international scholarly communities, and to champion Internet access for (...) all. (shrink)

In Pabon v. Wright, the Second Circuit held that the Fourteenth Amendment right to refuse medical treatment contained a corollary right to the information necessary to make an informed decision. Plaintiff, William Pabon, was an inmate at Green Haven Correctional Facility in New York. He named two groups of defendants: his doctors and nurses at Green Haven and his doctors at Dutchess Gastroenterologists, P.C..In October 1996, a laboratory test indicated that Plaintiff may have contracted Hepatitis C. The (...) Green Haven doctors referred Plaintiff to Dutchess for additional testing, where additional tests confirmed that Plaintiff had Hepatitis C. In July 1997, Plaintiff returned to Dutchess for additional evaluation, and the physicians told him that he must undergo a liver biopsy in order to receive treatment for his condition. (shrink)

Many people who have reached the age of majority still qualify as financial dependents of their parents, and may be registered as dependents on their parents’ medical schemes. This poses a practical conundrum, because major persons enjoy complete autonomy over their bodies to choose healthcare services as they please, including informational determination. However, their sensitive health information may end up being disclosed in the accounts rendered to their parents, as main members of medical schemes, thereby breaching their informational privacy, (...) medical confidentiality and possibly also damaging personal relationships. On the other hand, medical schemes must ensure that they strictly manage the business of their hospitalisation to ensure that they can adhere to their contractual and legal medical insurance obligations. Both major but financially dependent patients and medical schemes have good legal grounds to defend their respective positions. In this article, we will analyse and clarify the applicable legal and ethical grounds by considering medical confidentiality, the Protection of Personal Information Act, the Consumer Protection Act and the Medical Schemes Act and rules. We shall conclude with recommendations to accommodate the interests of both parties. (shrink)

This book presents the latest research on the challenges and solutions affecting the equilibrium between freedom of speech, freedom of information, information security, and the right to informational privacy. Given the complexity of the topics addressed, the book shows how old legal and ethical frameworks may need to be not only updated, but also supplemented and complemented by new conceptual solutions. Neither a conservative attitude (“more of the same”) nor a revolutionary zeal (“never seen before”) is likely (...) to lead to satisfactory solutions. Instead, more reflection and better conceptual design are needed, not least to harmonise different perspectives and legal frameworks internationally. The focus of the book is on how we may reconcile high levels of information security with robust degrees of informational privacy, also in connection with recent challenges presented by phenomena such as “big data” and security scandals, as well as new legislation initiatives, such as those concerning “the right to be forgotten” and the use of personal data in biomedical research. The book seeks to offer analyses and solutions of the new tensions, in order to build a fair, shareable, and sustainable balance in this vital area of human interactions. (shrink)

The right to withdraw from participation in research is recognized in virtually all national and international guidelines for research on human subjects. It is therefore surprising that there has been little justification for that right in the literature. We argue that the right to withdraw should protect research participants from information imbalance, inability to hedge, inherent uncertainty, and untoward bodily invasion, and it serves to bolster public trust in the research enterprise. Although this argument is not (...) radical, it provides a useful way to determine how the right should be applied in various cases. (shrink)

The “Right to be forgotten” lies at the heart of the infosphere debate. It embodies how mature information societies cope and deal with their memories. As such, it has become a defining issue of our time. Drawing on the author’s experience as a member of the Google Advisory panel, this paper discusses some of the salient points of the “Right to be forgotten” discourse, including: privacy vs. freedom of speech and availability vs. accessibility of information. It (...) argues that, while there should be no removal of past information, steps must be taken to ensure that this is not constantly, or unnecessarily, recalled. (shrink)

We speak of the right to know with relative ease. You have the right to know the results of a medical test or to be informed about the collection and use of personal data. But what exactly is the right to know, and who should we trust to safeguard it? This book provides the first comprehensive examination of the right to know and other epistemic rights: rights to goods such as information, knowledge and truth. These (...) rights play a prominent role in our information-centric society and yet they often go unnoticed, disregarded and unprotected. As such, those who control what we know, or think we know, exert an influence on our lives that is often as dangerous as it is imperceptible. Beginning with a rigorous but accessible philosophical account of epistemic rights, Lani Watson examines the harms caused by epistemic rights violations, drawing on case studies across medical, political and legal contexts. She investigates who has the right to what information, who is responsible for the quality and circulation of information and what epistemic duties we have towards each other. This book is essential reading for philosophers, legal theorists and anyone concerned with the protection and promotion of information, knowledge and truth.. (shrink)

The first part of this paper is about the notion of privacy and its grounding in law. It discusses the tension between the right to privacy and the right to receive information. The second part of this paper explores how ICTs challenge and complicate privacy claims and satisfy the right to receive information.

Margaret Brazier has argued that, in the literature on reproductive technology, women's “right” to reproduce is privileged, pushed, and subordinated to patriarchal values in such a way that it amounts to women's old “duty” to reproduce, dressed up in modern guise. I agree that there are patriarchal assumptions made in discussions of whether women have a right to select which embryos to implant or which fetuses to carry to term. Forcing ourselves to see women as active, rational decisionmakers (...) tends to counteract any lingering patriarchal assumptions. But rational decisionmaking requires information. Voting wisely requires information about the candidates. Taking women's reproductive rights seriously means taking seriously women's need for relevant information to make rational decisions, including decisions about which embryos to implant or alter. I argue that preimplantation genetic profiles and prenatal test information should be made available to prospective parents, especially prospective mothers, unless doing so threatens to harm the resulting child or the larger society in specifiable and important ways. (shrink)

The right to withdraw from participation in research is recognized in virtually all national and international guidelines for research on human subjects. It is therefore surprising that there has been little justification for that right in the literature. We argue that the right to withdraw should protect research participants from information imbalance, inability to hedge, inherent uncertainty, and untoward bodily invasion, and it serves to bolster public trust in the research enterprise. Although this argument is not (...) radical, it provides a useful way to determine how the right should be applied in various cases. (shrink)

In Pabon v. Wright, the Second Circuit held that the Fourteenth Amendment right to refuse medical treatment contained a corollary right to the information necessary to make an informed decision. Plaintiff, William Pabon, was an inmate at Green Haven Correctional Facility in New York. He named two groups of defendants: his doctors and nurses at Green Haven and his doctors at Dutchess Gastroenterologists, P.C..In October 1996, a laboratory test indicated that Plaintiff may have contracted Hepatitis C. The (...) Green Haven doctors referred Plaintiff to Dutchess for additional testing, where additional tests confirmed that Plaintiff had Hepatitis C. In July 1997, Plaintiff returned to Dutchess for additional evaluation, and the physicians told him that he must undergo a liver biopsy in order to receive treatment for his condition. (shrink)

Modernity is marked by the advent of technologies capable of storing data almost indefi­nitely. On the other hand, the data collection takes place without the conscious permission of the users. The storage and collection of personal data is a potential problem, since the digital footprint of a person on the Internet has an impact on the social and political rep­resentation of the individual, its perception by other actors. Compromising the content of a digital footprint can expose information that is (...) not intended for others. There is cur­rently an increasing trend of misuse of stored data, both by criminals and by companies that use the data for sale or surveillance. The need to control how data is collected, stored and used leads to the emergence in the academic literature and the legal field of the “right to be forgotten”, which allows a person to actively moderate the process of collecting and storing data, to participate in determining the circle of those to whom they can be accessed, and delete personal data. The adoption of such a right not only allows the state to influence the collection and storage of data, regulating interactions through law-making activities, but also to realize the potential of an autonomous individual. The prospect of legislating the right to be forgotten has sparked debate in the academic and professional community about the destruction of the free marketplace of ideas and the imposition of political censor­ship on the Internet. The article deals with the philosophical, ethical and political founda­tions of the right to be forgotten. The article substantiates the conclusion that the right to be forgotten has a positive heuristic potential, but at the same time it has conceptual flaws, and is also not able to completely correct the current situation of data processing. However, the implementation of the right to be forgotten in the future can have a beneficial effect on the current situation in the field of collection and storage of personal data. (shrink)

The vast majority of philosophers and legal theorists who have thought about the issue agree that there is such a thing as a moral right to privacy. However, there is little or no theoretical consensus about the nature of this right. According to reductionists, the right to privacy amounts to nothing more than a cluster of property rights and rights over the person, and therefore plays no autonomous explanatory role in moral theory (Thomson 1975, Davis 1959). Among (...) non-reductionists, there are almost as many accounts of the right to privacy as there are synagogues in the old town of Jerusalem. For one group of non-reductionists (perhaps the majority), the right to privacy is properly understood as a right of control, a form of autonomy. Within this group, some think that the right to privacy is the right to control information about oneself (Westin 1967, Beardsley 1971, Gerstein 1978, Fried 1970, Moore 2003), while others insist that it is the right to control access to oneself (Parker 1974, Scanlon 1975, Rachels 1975, Reiman 1976, Van den Haag 1971). For another group of non-reductionists, the right to privacy is the right to cognitive and/or physical inaccessibility (Gavison 1980, Garrett 1974, Allen 1988). Though these are by far the most widely adopted non-reductionist accounts of the relevant right, they are by no means the only ones currently on offer. There are hybrid accounts according to which the right to privacy is a cluster of various rights of control (Inness 1992) or a cluster of various rights of control and restricted access (DeCew 1997). And according to an influential “information-based” account, the right to privacy 1 is defined as the right that others not possess undocumented personal information about the right-holder (Parent 1983a; 1983b). The purpose of this paper is to bring some order to this theoretical chaos. On my view, none of these accounts of the right to privacy is accurate.. (shrink)

Ethics in research can be broadly divided into two epistemic dimensions. One dimension focuses on bureaucratic procedures (i.e., procedural ethics), while the other focuses on contextually and culturally contested practice of ethics in research (i.e., ethics in practice). Researchers experience both dimensions distinctly in their qualitative research. The review of ethics in prospective research through bureaucratic procedures aims to measure compliance with documented requirements relating to research participants, data management, consent, and ensure researchers can demonstrate their ethical competence before they (...) commence their research. However, researchers often experience unanticipated ethical issues within the context of their research; sometimes ethics-related situations, including language sensitivity, cultural humility, and data processing experienced by researchers can be very different from what was included in bureaucratic procedures. In this study, phenomena related to research ethics in practice, as experienced by social scientists (n = 5) in their qualitative research, are hermeneutically explored and interpreted. The selected phenomena represent the researchers’ lived experiences regarding the practice of participant autonomy, specifically exploring participants’ right to withdraw from research. These phenomena are interpreted from the theoretical perspectives of situational relativism and self-determined autonomy. The interpreted phenomena reveal the current practices in ethical management of data collected from participants before their decision to withdraw from research (i.e., withdrawal data), are predominantly focused on tangible forms of data (i.e., the information that can easily be distinguished from other data), but ethical concerns associated with intangible forms of data are often neglected. The intangible forms of data are experiential knowing and understanding that include, feeling, emotion, courage, respect, celebration, anger, and the sense of being and belonging. The study recommends that researchers and research professionals should exercise ethical sensitivity and humility towards intangible forms of data collected during qualitative research when participants withdraw their consent. (shrink)

In the European Union, the General Data Protection Regulation (GDPR) provides comprehensive rules for the processing of personal data. In addition, the EU lawmaker intends to adopt specific rules to protect confidentiality of communications, in a separate ePrivacy Regulation. Some have argued that there is no need for such additional rules for communications confidentiality. This Article discusses the protection of the right to confidentiality of communications in Europe. We look at the right’s origins to assess the rationale for (...) protecting it. We also analyze how the right is currently protected under the European Convention on Human Rights and under EU law. We show that at its core the right to communications confidentiality protects three individual and collective values: privacy, freedom of expression, and trust in communication services. The right aims to ensure that individuals and organizations can safely entrust communication to service providers. Initially, the right protected only postal letters, but it has gradually developed into a strong safeguard for the protection of confidentiality of communications, regardless of the technology used. Hence, the right does not merely serve individual privacy interests, but also other more collective interests that are crucial for the functioning of our information society. We conclude that separate EU rules to protect communications confidentiality, next to the GDPR, are justified and necessary. (shrink)

In Pabon v. Wright, the Second Circuit held that the Fourteenth Amendment right to refuse medical treatment contained a corollary right to the information necessary to make an informed decision. Plaintiff, William Pabon, was an inmate at Green Haven Correctional Facility in New York. He named two groups of defendants: his doctors and nurses at Green Haven and his doctors at Dutchess Gastroenterologists, P.C..In October 1996, a laboratory test indicated that Plaintiff may have contracted Hepatitis C. The (...) Green Haven doctors referred Plaintiff to Dutchess for additional testing, where additional tests confirmed that Plaintiff had Hepatitis C. In July 1997, Plaintiff returned to Dutchess for additional evaluation, and the physicians told him that he must undergo a liver biopsy in order to receive treatment for his condition. (shrink)

The organ transplantation enterprise is morally flawed. “Brain‐dead” donors are the primary source of solid vital organs, and the transplantation enterprise emphasizes that such donors are dead before organs are removed—or in other words that the dead donor rule is followed. However, individuals meeting standard diagnostic criteria for brain death—unresponsiveness, brainstem areflexia, and apnea—are still living, from a physiological perspective. Therefore, removing vital organs from a heart‐beating, mechanically ventilated donor is lethal. But neither donors nor surrogates nor the public in (...) general are typically informed of this obviously relevant information. Therefore, donors or surrogates do not provide valid consent for a lethal medical procedure. This is a serious moral failing on the part of the transplant community. To address this concern, I advocate for accurate and fully transparent communication of information to the public to allow for an informed civic dialogue about the ethics and legality of lethal organ procurement. Furthermore, I advocate that systems be put in place by the transplant community to allow for valid consent for lethal organ procurement. (shrink)

In recent years, the right of employees to know about health hazards in the workplace has emerged as a major issue in occupational health policy. A general consensus has gradually evolved that there is a right to know, and correlatively that there is a moral obligation to disclose relevant information to workers. For example, the National Institute for Occupational Safety and Health, and several other U.S. federal agencies, informed the U.S. Senate as early as July 1977 that (...) ‘workers have the right to know whether or not they are exposed to hazardous chemical and physical agents regulated by the Federal Government.’ In 1980, the Occupational Safety and Health Adminstration promulgated regulations guaranteeing workers access to medical and exposure records. (shrink)

Since approval of the EU General Data Protection Regulation (GDPR) in 2016, it has been widely and repeatedly claimed that the GDPR will legally mandate a ‘right to explanation’ of all decisions made by automated or artificially intelligent algorithmic systems. This right to explanation is viewed as an ideal mechanism to enhance the accountability and transparency of automated decision-making. However, there are several reasons to doubt both the legal existence and the feasibility of such a right. In (...) contrast to the right to explanation of specific automated decisions claimed elsewhere, the GDPR only mandates that data subjects receive meaningful, but properly limited, information (Articles 13-15) about the logic involved, as well as the significance and the envisaged consequences of automated decision-making systems, what we term a ‘right to be informed’. Further, the ambiguity and limited scope of the ‘right not to be subject to automated decision-making’ contained in Article 22 (from which the alleged ‘right to explanation’ stems) raises questions over the protection actually afforded to data subjects. These problems show that the GDPR lacks precise language as well as explicit and well-defined rights and safeguards against automated decision-making, and therefore runs the risk of being toothless. We propose a number of legislative and policy steps that, if taken, may improve the transparency and accountability of automated decision-making when the GDPR comes into force in 2018. (shrink)

ObjectivesTo determine to which degree industry partners in randomised clinical trials own the data and can constrain publication rights of academic investigators.MethodsCohort study of trial protocols, publication agreements and other documents obtained through Freedom of Information requests, for a sample of 42 trials with industry involvement approved by ethics committees in Denmark. The main outcome measures used were: proportion of trials where data was owned by the industry partner, where the investigators right to publish were constrained and if (...) this was mentioned in informed consent documents, and where the industry partner could review data while the trial was ongoing and stop the trial early.ResultsThe industry partner owned all data in 20 trials (48%) and in 16 trials (38%) it was unclear. Publication constraints were described for 30 trials (71%) and this was not communicated to trial participants in informed consent documents in any of the trials. In eight trials (19%) the industry partner could review data during the trial, for 20 trials (48%) it was unclear. The industry partner could stop the trial early without any specific reason in 23 trials (55%).ConclusionsPublication constraints are common, and data is often owned by industry partners. This is rarely communicated to trial participants. Such constraints might contribute to problems with selective outcome reporting. Patients should be fully informed about these aspects of trial conduct. (shrink)

Recently, John Doe, an undocumented immigrant who was detained by United States Immigration and Customs Enforcement, was admitted to a hospital off-site from a detention facility. Custodial officers accompanied Mr. Doe into the exam room and refused to leave as physicians examined him. In this analysis, we examine the ethical dilemmas this case brings to light concerning the treatment of patients in immigration detention and their rights to privacy. We analyze what US law and immigration detention standards allow regarding immigration (...) enforcement or custodial officers’ presence in medical exams and documentation of detainee health information. We describe the ethical implications of the presence of officers in medical exam rooms, including its effects on the quality of the patient-provider relationship, patient privacy and confidentiality, and provider's ability to provide ethical care. We conclude that the presence of immigration enforcement or custodial officers during medical examination of detainees is a breach of the right to privacy of detainees who are not an obvious threat to the public. We urge ICE and the US Department of Homeland Security to clarify standards for and tighten enforcement around when officers are legally allowed to be stationed in medical exam rooms and document detainees’ information. (shrink)

Some might argue that a right to access information is problematic, as it requires too much from others. Being a "positive right," the possession of which foists upon others a duty to provide something, an RAI might be thought to contrast with a "negative right," such as the right not to be harmed. Here, other people have duties only to refrain from performing certain actions. The critics this paper is concerned with continue that positive rights (...) are problematic, where negative rights are not, since the former obligate people to do something, which is more taxing than obligating people not to do something. So according to a critic of RAIs, such rights are difficult, if not impossible, to justify.This paper takes no position on whether an RAI is positive or negative. It also does not argue whether positive rights can be justified or not. Instead, it argues that, if an RAI is positive, then so are intellectual property rights . This is significant, as critics of RAIs may hold to IPRs. . This paper argues against that one cannot reject an RAI on the basis of its being a positive right without also losing their justification for IPRs. If this is correct, then, proponents of intellectual property who reject an RAI must find independent justification for the former, which itself will not extend to the latter.This is good news for the defender of RAIs, since the sting is removed from one potential criticism thereof. If people have an RAI, this is not anymore burdensome than other rights currently in effect. (shrink)

Although the patient’s right to decide what they want for themselves, which is encompassed in the notion of ‘patient-centred medicine’ and ‘informed consent’, is widely recognised and emphasised in Japan, there remain grave problems when it comes to respecting the wishes of the no-longer-competent when death is imminent. In general, it is believed that the concepts above do not include the right to refuse treatment when treatment withdrawal inevitably results in death, even when the patient previously expressed the (...) wish to exercise this right when competent. In this paper, I first explain the current social and legal situation in Japan, where the lack of legal clarity regarding the right to reject treatment tends to result in doctors adopting the interpretation of patients’ words that is least conducive to treatment withdrawal. I then argue that the right to refuse treatment should be taken seriously, even when the patient is no longer competent, or the treatment refusal will result in death. I suggest that the concept of relational autonomy might have some practical and valuable implications in a country where individual autonomy is considered incompatible with societal values. Finally, I answer possible objections to relational autonomy and address the widespread societal concern about sliding down the slippery slope from allowing the right to refuse treatment to the obligation to die. (shrink)

The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book (...) considers the right to know and the right not to know about your own and others’ genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media. (shrink)

The people's right to know and press rights to gather and publish information remain dominant justifications for controversial media activities. Yet, the power of the media to set the agenda for public discourse in our country warrants a careful analysis of these rights, their corresponding responsibilities, and their moral limits. This article examines the right to know and press freedom from the perspective of their shared purpose, facilitation of informed decision making. This article also demonstrates moral justification (...) of limits on right to know and press freedom based on traditional ethics theories and media impact on public discourse. (shrink)

The paper points out that in dynamic games a player may be better-off if other players do not know his choice of strategy. That is, a player may benefit by not revealing (or not pre-determining) the choice of his action in an information set he (thereby) hopes will not be reached. He would be better-off by exercising his ``right to remain silent'' if he believes –- as the empirical evidence shows –- that players display aversion to ``Knightian uncertainty''. (...) In this case, a player who behaves strategically, may wish to avoid revealing his strategy. This is true under various interpretations of the notion of ``strategy profiles''. (shrink)