Personal information is key to informational privacy and the algorithmically generated profiles of individuals. However, the concept of personal information and its nature is rarely discussed. The concept of personal information thus seems to be based on an idea of information as objective and truthful—as natural information—that is depicted as digital footprints in the online and digital realm. I argue that the concept of personal information should exit the realm of (...) natural information and enter the realm of nonnatural information—grounded in meaning, intention, and convention—as this will provide us with a concept that can account for potential misleadingness, inaccuracies, and mistakes. (shrink)

Novel and emerging technologies can provide users with new kinds and unprecedented amounts of information about themselves, such as autobiographical information, neurodata, health information, or characteristics inferred from online behavior. Technology providing extensive personal information (PI technology) can impact who we take ourselves to be, how we constitute ourselves, and indeed who we are. This paper analyzes how the external, quantified perspective on us offered by PI technology affects identity based on a narrative identity theory. (...) Disclosing the intimate relationship between PI technology and identity sheds light on a whole new range of ethical issues that have so far not received sufficient attention. Personal information provided by technology is not just information that belongs to individuals but that changes them. (shrink)

When involved in a disagreement, a common reaction is to tell oneself that, given that the information about one’s own epistemic standing is clearly superior in both amount and quality to the information about one’s opponent’s epistemic standing, one is justified in one’s confidence that one’s view is correct. In line with this natural reaction to disagreement, some contributors to the debate on its epistemic significance have claimed that one can stick to one’s guns by relying in part (...) on information about one’s first-order evidence and the functioning of one’s cognitive capacities. In this article, I argue that such a manoeuvre to settle controversies encounters the problem that both disputants can make use of it, the problem that one may be wrong about one’s current conscious experience, and the problem that it is a live possibility that many of one’s beliefs are the product of epistemically distorting factors. I also argue that, even if we grant that personal information is reliable, when it comes to real-life rather than idealized disagreements, the extent of the unpossessed information about one’s opponent’s epistemic standing provides a reason for doubting that personal information can function as a symmetry breaker. (shrink)

Novel and emerging technologies can provide users with new kinds and unprecedented amounts of information about themselves, such as autobiographical information, neurodata, health information, or characteristics inferred from online behavior. Technology that provides extensive personal information (PI technology) can impact who we understand ourselves to be, how we constitute ourselves, and indeed who we are. This paper analyzes how PI technology’s external, quantified perspective on us affects identity based on a narrative identity theory. Disclosing the (...) intimate relationship between PI technology and identity sheds light on a whole new range of ethical issues that have received insufficient attention so far. Personal information provided by technology is not just information that belongs to individuals but also changes them. (shrink)

The paper extends previous accounts of informational privacy as a contextual notion. Where previous accounts have focused on interpretations of the privacy context itself as being contextual and open for negotiation and interpretation, this paper extends those analyses and shows that personal information itself is in fact best understood as contextual and situational—and as such open for interpretation. The paper reviews the notion of information as it has been applied in informational privacy and philosophy of information, (...) and suggests that personal information ought to be regarded as communicative acts. The paper suggests a reconceptualization of informational privacy from having its focus on controlling, limiting, and restricting access to material carriers of information to a focus on a regulation of the use, analysis, and interpretation of personal information. (shrink)

Objective: To determine the views of people with multiple sclerosis (MS) and professionals in relation to confidentiality, consent and access to data within a proposed MS register in the UK. Design: Qualitative study using focus groups (10) and interviews (13). Setting: England and Northern Ireland. Participants: 68 people with MS, neurologists, MS nurses, health services management professionals, researchers, representatives from pharmaceutical companies and social care professionals. Results: People with MS expressed open and altruistic views towards the use of their (...) class='Hi'>personal information to facilitate service provision and research, placing trust in responsible guardianship and legitimate use of their information. Participant’s proposed that people with MS should be able to select their individual level of involvement in a register using levels of consent. It was agreed that access to the register should be governed by a guardianship committee composed of a range of stakeholders. People with MS did not wish their details to be used by marketing agencies and did not consider this a legitimate use of their data. Whilst participants were positive of the role a register could play in promoting research, participants felt that access to data by pharmaceutical industries should be administered by the guardianship committee. People with MS are concerned should their employers be able to access their personal information. Professionals were more cautious than people with MS in their approach to the use of patient personal data within a register. Conclusions: Whilst all stakeholders were positive of the benefits of an MS register, development of such a resource must incorporate robust data security and guardianship measures in order to ensure that, whilst opportunities are maximised, risks to the privacy of individuals and legal challenges to professionals are avoided. (shrink)

In this paper, I shall discuss what I call the Argument From Exploitation. This argument has as its conclusion that for-profit markets in personal information are morally impermissible. The main premise given for this conclusion is that markets in personal information involve exploitation of vulnerable people, and appertaining inequalities. I try to show that at least one of the premises of this argument is false. I then entertain an objection to my argument that holds that adding (...) the option for vulnerable people to sell their personal information is in itself harmful, even if these people would be better off if they took the option. I try to demonstrate why that objection is not successful. In the end, I conclude that the Argument From Exploitation is not sound, and that until proven otherwise, we should thus think that markets in personal information are morally permissible. (shrink)

In Québec, the Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information provides an exception to transparency to most public institutions where public health research is conducted by allowing them to not disclose their uses of personal data. This exceptionalism is ethically problematic due to important concerns and we argue that all those who conduct research should be transparent and accountable for the work they do in the public interest.

Computer programs are used to obtain and store information about the online activities of users of the web. Many people are concerned about this practice because they believe that it can violate users' rights to privacy or result in violations of them. This belief is based on the assumption that the information obtained and stored with the use of the programs includes personal information. My main aim in this paper is to argue that this assumption is (...) false. I discuss the import of this result for computer ethics. If my thesis is correct, using the programs cannot violate a person's right to privacy and cannot result in violations of a right to privacy. Nevertheless it is prima facie morally wrong because, as I explain, it encourages people to perform actions that diminish the well-being of others. I discuss the implications of my thesis for the obligations of online businesses with regard to the relevant information. (shrink)

BackgroundStigma refers to a distinguishing personal trait that is perceived as or actually is physically, socially, or psychologically disadvantageous. Little is known about the opinion of those who have more or less stigmatizing health conditions regarding the need for consent for use of their personal information for health research.MethodsWe surveyed the opinions of people 18 years and older with seven health conditions. Participants were drawn from: physicians' offices and clinics in southern Ontario; and from a cross-Canada marketing (...) panel of individuals with the target health conditions. For each of five research scenarios presented, respondents chose one of five consent choices: (1) no need for me to know; (2) notice with opt-out; (3) broad opt-in; (4) project-specific permission; and (5) this information should not be used. Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research. We conducted focus groups to discuss possible reasons for observed consent choices.ResultsWe observed substantial variation in the control that people wish to have over use of their personal information for research. However, consent choice profiles were similar across health conditions, possibly due to sampling bias. Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices. People were more willing to link their health information with biological samples than with information about their income, occupation, or education.ConclusionsThe heterogeneity in consent choices suggests individuals should be offered some choice in use of their information for different types of health research, even if limited to selectively opting-out. Some of the implementation challenges could be designed into the interoperable electronic health record. However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive. (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)

Given the increasing need for solid organ and tissue transplants and the decreasing supply of suitable allographic organs and tissue to meet this need, it is understandable that the hope for successful xenotransplantation has resurfaced in recent years. The biomedical obstacles to xenotransplantation encountered in previous attempts could be mitigated or overcome by developments in immunosuppression and especially by genetic manipulation of organ source animals. In this essay we consider the history of xenotransplantation, discuss the biomedical obstacles to success, explore (...) recent developments in transgenic sourcing of organs and tissues, and analyze the problem of infectious disease resulting from xenotransplantation (xenosis). We then apply a model of risk analysis to these risks. The conclusions of this risk analysis are used in an ethical evaluation of informed consent in xenotransplantation, with an ethical foundation in Kantian autonomy and Levinasian heteronomic alterity. Our conclusion is that individual and collective informed consent to the infectious disease risks of xenotransplantation requires an open, participatory and dialogical public policy process not yet seen in the United States and Europe. Until that process is created, we propose caution in xenotransplantation in general and a postponement of solid organ xenotransplants in particular. (shrink)

The purpose of this paper is to show how certain uses of search-engine technology raise concerns for personal privacy. In particular, we examine some privacy implications involving the use of search engines to acquire information about persons. We consider both a hypothetical scenario and an actual case in which one or more search engines are used to find information about an individual. In analyzing these two cases, we note that both illustrate an existing problem that has been (...) exacerbated by the use of search engines and the Internet – viz., the problem of articulating key distinctions involving the public vs. private aspects of personal information. We then draw a distinction between “public personal information” and “nonpublic personal information” to see how this scheme can be applied to a problem of protecting some forms of personal information that are now easily manipulated by computers and search engines – a concern that, following Helen Nissenbaum , we describe as the problem of privacy in public. (shrink)

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

The Internet of Things (IoT) is, in part, an information handling system that can remove humans from the information handling process. The particular problem explored is how we are to understand privacy when considering informational systems that handle personal information in ways that impact people’s lives when there is no human operator in direct contact with that personal information. I argue that these new technologies need to take concepts like privacy into account, but also, (...) that we ought also to take these technologies into account to reconsider and perhaps reconceptualise privacy. This paper argues that while an inhuman system like the IoT does not necessarily violate the interpersonal privacy of people, if the IoT is used as part of a state surveillance program, a political notion of privacy may be violated. (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)

BackgroundThe role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public (...) dialogues.MethodsWe conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly.ResultsBroad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research.ConclusionBecause no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research. (shrink)

Recently, scholars have argued that disclosure of personal information is an effective mechanism for building high-quality relationships. However, personal information can focus attention on differences in demographically diverse teams. In an experiment using 37 undergraduate teams, we examine how sharing personal information by ethnically similar and ethnically distinct newcomers to a team affects team perceptions, performance, and behavior. Our findings indicate that the disclosure of personal information by ethnically distinct newcomers improves team (...) performance. However, the positive impact on team performance comes at a cost to the newcomers, who are perceived as less competent by others and experience heightened social discomfort in team interactions. Ironically, what benefits the ethnically diverse team may undermine its ethnically distinct members. This study highlights how the management of diversity may sometimes require making trade-offs between individual interests and those of the team. (shrink)

The purpose of this study is to investigate the relationship between a firm’s strategy and consumers’ decisions in the presence of the paradox of choice and sharing personal information. The paradox of choice implies that having too many choices does not necessarily ensure happiness and sometimes having less is more. A new model is constructed introducing a factor of information sharing into the model of a previous study that embedded the paradox of choice only (Kinjo and Ebina (...) in AI Soc 30(2):291–297, 2015). A key feature of the model is its disutility function. It is demonstrated that if the sign of the cross derivative of the function is positive (negative) at the optimum, there is a positive (negative) correlation between the degree of sharing personal information chosen by the consumers and the number of products offered by the firm in its recommendation systems. It is also numerically indicated that the profit function of the firm becomes convex or concave depending on the shape of the disutility function. These results suggest that firms should carefully investigate the shape of the disutility function, under the paradox of choice and sharing personal information. (shrink)

In studies publishing identifying personal information, obtaining consent is regarded as necessary, as it is impossible to ensure complete anonymity. However, current journal practices around specific points to consider when obtaining consent, the contents of consent forms and how consent forms are managed have not yet been fully examined. This study was conducted to identify potential issues surrounding consent to publish identifying personal information.

Contemporary privacy theories and European discussions about data protection employ the notion of ‘personal information’ to designate their areas of concern. The notion of personal information is demarcated from non-personal information—or just information—indicating that we are dealing with a specific kind of information. However, within privacy scholarship the notion of personal information appears undertheorized, rendering the concept somewhat unclear. We argue that in an age of datafication, protection of personal (...) information and privacy is crucial, making the understanding of what is meant by ‘personal information’ more important than ever. To contribute to this aim, we analyse the conception of personal information and its nature, including the distinction between personal and non-personal information from a philosophy of language perspective. Through analyses of aboutness and relative aboutness we point to challenges related to the demarcation between personal and non-personal information, which may in practice lead to all information being personal. (shrink)

People increasingly live online, sharing publicly what might have once seemed private, but at the same time are enraged by extremes of government surveillance and the corresponding invasion into our private lives. In this enlightening work, Adam Henschke re-examines privacy and property in the age of surveillance in order to understand not only the importance of these social conventions, but also their moral relevance. By analyzing identity and information, and presenting a case for a relation between the two, he (...) explains the moral importance of virtual identities and offers an ethically robust solution to design surveillance technologies. This book should be read by anyone interested in surveillance technology, new information technology more generally, and social concepts like privacy and property. (shrink)

How well can institutional guidelines help ensure the dignity, rights, safety and well being of research participants in an underdeveloped country? In this paper I describe the limits of informed consent as an instrument for the protection of participants in the context of the Philippines. I bring to this paper my experiences as an advocate of rights, a member of an ethics review board, a researcher on the ethics of research and as an observer of the dynamics of clinical practice (...) in an academic public teaching hospital of the University of the Philippines where I am professor. (shrink)

Computer abuse by employees is a critical concern for managers. Misuse of an organization’s information assets leads to costly damage to an organization’s reputation, decreases in sales, and impositions of fines. We use this opportunity to introduce and expand the theoretic framework proffered by Thong and Yap to better understand the factors that lead individuals to commit CA in organizations. The study uses a survey of 449 respondents from the banking, financial, and insurance industries. Our results indicate that individuals (...) who adhere to a formalist ethical perspective are significantly less likely to engage in CA activities than those following a utilitarian ethical framework. In addition, the results provide evidence that employees with individualistic natures are linked to increased CA incidents, whereas collectivist tendencies are associated with decreases in CA behaviors. Our results also show that collectivism acts as a strong moderator that further decreases the relationships between formalism and CA, and utilitarianism and CA. Finally, we offer detailed suggestions on how organizations and researchers can leverage our findings to decrease CA occurrences. (shrink)

How well can institutional guidelines help ensure the dignity, rights, safety and well being of research participants in an underdeveloped country? In this paper I describe the limits of informed consent as an instrument for the protection of participants in the context of the Philippines. I bring to this paper my experiences as an advocate of rights, a member of an ethics review board, a researcher on the ethics of research and as an observer of the dynamics of clinical practice (...) in an academic public teaching hospital of the University of the Philippines where I am professor. (shrink)

Ethical decisions related to computer technology and computer use are subject to three primary influences: (1) the individual's own personal code (2) any informal code of ethical behavior that exists in the work place, and (3) exposure to formal codes of ethics. The relative importance of these codes, as well as factors influencing these codes, was explored in a nationwide survey of information system (IS) professionals. The implications of the findings are important to educators and employers in the (...) development of acceptable ethical standards. (shrink)

Three experiments examined whether the mere priming of potential action effects enhances people’s feeling of causing these effects when they occur. In a computer task, participants and the computer independently moved a rapidly moving square on a display. Participants had to press a key, thereby stopping the movement. However, the participant or the computer could have caused the square to stop on the observed position, and accordingly, the stopped position of the square could be conceived of as the potential effect (...) resulting from participants’ action of pressing the stop key. The location of this position was primed or not just before participants had to stop the movement. Results showed that priming of the position enhanced experienced authorship of stopping the square. Additional experimentation demonstrated that this priming of agency was not mediated by the goal or intention to produce the effect. (shrink)

The never ending growth of digital information and the availability of low-cost storage facilities and networks capacity is leading users towards moving their data to remote storage resources. Since users’ data often holds identity-related information, several privacy issues arise when data can be stored in untrusted domains. In addition digital identity management is becoming extremely complicated due to the identity replicas proliferation necessary to get authentication in different domains. GMail and Amazon Web Services, for instance, are two examples (...) of online services adopted by million of users throughout the world which hold huge amounts of sensitive users data. State-of-the-art encryption tools for large-scale distributed infrastructures allow users to encrypt content locally before storing it on a remote untrusted repository. This approach can experience performance drawbacks, when very large data-sets must be encrypted/decrypted on a single machine. The proposed approach extends the existing solutions by providing two additional features: (1) the encryption can also be delegated to a pool of remote trusted computing resources, and (2) the definition of the encryption context which drives the tool to select the best strategy to process the data. The performance benchmarks are based on the results of tests carried out both on a local workstation and on the Grid INFN Laboratory for Dissemination Activities (GILDA) testbed. (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)

In this paper, I present an informational approach to the nature of personal identity. In “Plato and the problem of the chariot”, I use Plato’s famous metaphor of the chariot to introduce a specific problem regarding the nature of the self as an informational multiagent system: what keeps the self together as a whole and coherent unity? In “Egology and its two branches” and “Egology as synchronic individualisation”, I outline two branches of the theory of the self: one concerning (...) the individualisation of the self as an entity, the other concerning the identification of such entity. I argue that both presuppose an informational approach, defend the view that the individualisation of the self is logically prior to its identification , and suggest that such individualisation can be provided in informational terms. Hence, in “A reconciling hypothesis: the three membranes model”, I offer an informational individualisation of the self, based on a tripartite model, which can help to solve the problem of the chariot. Once this model of the self is outlined, in “ICTs as technologies of the self” I use it to show how ICTs may be interpreted as technologies of the self. In “The logic of realisation”, I introduce the concept of “realization” (Aristotle’s anagnorisis ) and support the rather Spinozian view according to which, from the perspective of informational structural realism, selves are the final stage in the development of informational structures. The final “Conclusion: from the egology to the ecology of the self” briefly concludes the article with a reference to the purposeful shaping of the self, in a shift from egology to ecology. (shrink)

Broad genome-wide testing is increasingly finding its way to the public through the online direct-to-consumer marketing of so-called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision-making with regard to the testing offer, we (...) argue that current practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

Purpose. The research is devoted to the analysis of the urgent problem of the information society: the overload of a person with information and, as a result, the impossibility of adequate formation and development of the personality; as well as the problem of "digitization" of human existence and the formation of a new reality of dataism. Theoretical basis. A lot of modern scientific works are devoted to the analysis of the information society, its problems and features. The (...) information society is a logical continuation of the scientific and technological revolution, which led to the rapid growth of scientific knowledge and the technology development. In the 20th century, technologies have touched the sphere of knowledge and information, as a result of which the formation and development of the information society, or "knowledge society", takes place. Information becomes the main resource in it, and, one way or another, a person’s life is inextricably connected with the information space. With the information society formation, the problem of information search and processing becomes one of the most urgent. It turns out that despite the abundance and availability of information, it is very difficult to determine its relevance. A lot of effort is spent on developing information retrieval algorithms. Another problem is related to the person’s inability to process large amounts of data. This situation begins to influence not only the education process and professional activity, but also the formation of a person’s personality. A person is "lost" in the information space and gradually loses his/her "I". Algorithms for data analysis come to the rescue, but gradually, instead of giving a person material for thought, they begin to make decisions on their own, and therefore, live life instead of a person. With the advent of Big Data processing algorithms, a new ideological paradigm appears – dataism, which predicts the merger of a person with the general data flow. Originality. The authors make assumptions that the dataistic future is "natural". A lot of works, including in the framework of philosophy, are focused on the problem of "dissolving" a person in the information space and finding ways to overcome it. But, in our opinion, this process is a completely logical continuation of human evolution. Conclusions. Existence of a person as a data flow is not a problem and a threat, but a new dimension of his/her being, and, therefore, requires a careful study and formulation of the main principles of this form of existence. (shrink)

Two ways of understanding the notion of autonomy are outlined and discussed in this article, in order to clarify how and if informed consent requirements in biotechnological research are to be justified by the promotion of personal autonomy: A proceduralist conception linking autonomy with authenticity, and a substantivist conception linking autonomy with control. The importance of distinguishing autonomy from liberty is emphasised, which opens for a possible conflict between respecting the freedom and the autonomy of research participants. It is (...) argued that this has implications for how consent requirements based on different criteria of specificity and understanding should be viewed and justified. (shrink)

Background Previous research on informed consent for research in psychiatric patients has centered on disorders that affect comprehension and appreciation of risks. Little has been written about consent to research in those subjects with Borderline Personality Disorder, a prevalent and disabling condition. Discussion Despite apparently intact cognition and comprehension of risks, a borderline subject may deliberately choose self-harm in order to fulfill abnormal psychological needs, or due to suicidality. Alternatively, such a subject may refuse enrollment due to transference or the (...) desire to harm him or herself. Such phenomena could be precipitated or prevented by the interpersonal dynamics of the informed consent encounter. Summary Caution should be exercised in obtaining informed consent for research from subjects with Borderline Personality Disorder. A literature review and recommendations for future research are discussed. (shrink)

Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we (...) argue that current practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

There is substantial published evidence showing that countless people enroll each year in ethically deficient clinical trials. Many of the trials are problematic because the quality of the science used to justify their launch may not be sufficiently vetted while many other trials may lack requisite social value. This poses the question: why do people volunteer for them? The answer resides in large part in the fact that informed consent practices have historically masked, rather than disclosed, the information that (...) would alert research candidates to the ethically problematic nature of the trials. The “reasonable person” and “key information” provisions in the revised US Common Rule create the opportunity to correct this historical shortcoming. Two sources are employed to shed light on what the “key information” is that should be disclosed to a “reasonable person”: the original disclosure aims of the Nuremberg Code, as well as an extensive body of meta-research evidence. Those sources jointly support a range of new disclosures in the informed consent process that would unmask the heretofore undisclosed information. The resulting proposed new disclosures pertain to the overall success prospects of clinical trials, the quality of the prior research that both forms the basis of clinical trials and informs assessment of their risks and benefits, the potential social value of clinical trials, and the commercial purposes of clinical trials. (shrink)

This paper explores the dominant rational approach to informed consent and challenges the appropriateness of this approach to ethical decision‐making with people with dementia. In dementia care a dominant assumption exists that people are not autonomous because of their inability to make decisions and exercise freedom of choice. The rational understanding of autonomy being the capacity to exercise freedom of choice means that health and social care professionals feel justified in making decisions on behalf of the person with dementia. If (...) a person cannot consent to an intervention then a proxy is used to make the decision. This paper argues that such an approach reinforces the mind‐body dualism that dominates health and social care discourse. Whilst acknowledging the place of proxy decision‐making, it is argued that there is a need to hear the voice of the person with dementia that goes beyond rational understandings of what is heard and that does not reinforce separation of the mind and body. An understanding of the person through their ‘narrative identity’ is proposed and illustrated through a case example. Drawing on the philosophy of Ricoeur it is argued that an individual's narrative identity can be developed and used to underpin informed consent decisions. Using a case example it is argued that paying attention to an individual's narrative identity provides a way of respecting the autonomy of the individual with dementia in a way that is consistent with their overall life plan. (shrink)

Since the millennium, first person accounts of experience have been accepted as philosophically valid, potentially useful sources of information about the nature of mind and self. Several Vedic sciences rely on such first person accounts to discuss experience and consciousness. This paper shows that their insights define the information structure of experience in agreement with a scientific theory of mind fulfilling all presently known philosophical and scientific conditions. Experience has two separate components, its information content, and a (...) separate ‘witness aspect’, which can reflect on all forms of experience, and with training be strengthened until its power of reflection identifies it as the innermost aspect of ‘self’. The Vedic sciences, Sankhya, Yoga and Vedanta develop these themes. Sankhya identifies the different aspects of experience, outer and inner; Yoga practices lead the mind to inner states without information content (samadhi) in which the experience of the witness (sakshi) is strengthened and deepened. Vedanta states the nature of the ‘self’ is to know itself directly without intermediary. All this requires the witness to have a singular loop structure. The information structure of experience therefore has two aspects, information content plus a singular loop endowing it with a subjective sense of ‘Self’. (shrink)

BackgroundThe landscape of clinical research has evolved over the past decade. With technological advances, the practice of using electronic informed consent (eIC) has emerged. However, a number of challenges hinder the successful and widespread deployment of eIC in clinical research. Therefore, we aimed to investigate the views of various stakeholders on the potential advantages and challenges of eIC.MethodsSemi-structured interviews were conducted with 39 participants from 5 stakeholder groups from across 11 European countries. The stakeholder groups included physicians, patient organization representatives, (...) regulator representatives, ethics committee members, and pharmaceutical industry representatives, and all were involved in clinical research. Interviews were analyzed using the framework method.ResultsInterviewees identified that a powerful feature of eIC is its personalized approach as it may increase participant empowerment. However, they identified several ethical and practical challenges, such as ensuring research participants are not overloaded with information and offering the same options to research participants who would prefer a paper-based informed consent rather than eIC. According to the interviewees, eIC has the potential to establish efficient long-term interactions between the research participants and the research team in order to keep the participants informed during and after the study. Interviewees emphasized that a personal interaction with the research team is of utmost importance and this cannot be replaced by an electronic platform. In addition, interviewees across the stakeholder groups supported the idea of having a harmonized eIC approach across the European Member States.ConclusionsInterviewees reported a range of design and implementation challenges which needs to be overcome to foster innovation in informing research participants and obtaining their consent electronically. It was considered important that the implementation of eIC runs alongside the face-to-face contact between research participants and the research team. Moreover, interviewees expect that eIC could offer the opportunity to enable a personalized approach and to strengthen continuous communication over time. If successfully implemented, eIC may facilitate the engagement of research participants in clinical research. (shrink)

This comment on Chalgoumi et al.’s article “Information Privacy for Technology Users with Intellectual and Developmental Disabilities: Why Does It Matter?” focuses on the concept of autonomy in order to expand the scope of the ethical discussion. First we explore the conceptual and practical relations between privacy and autonomy. Following this, we address the issue of underfunding of information technology for persons with intellectual and developmental disabilities in terms of distributive justice and provide some potential policy solutions.