We are now acutely aware, as if all of the sudden, that data matters enormously to how we live. How did information come to be so integral to what we can do? How did we become people who effortlessly present our lives in social media profiles and who are meticulously recorded in state surveillance dossiers and online marketing databases? What is the story behind data coming to matter so much to who we are? -/- In How We Became Our Data, (...) Colin Koopman excavates early moments of our rapidly accelerating data-tracking technologies and their consequences for how we think of and express our selfhood today. Koopman explores the emergence of mass-scale record keeping systems like birth certificates and social security numbers, as well as new data techniques for categorizing personality traits, measuring intelligence, and even racializing subjects. This all culminates in what Koopman calls the “informational person” and the “informational power” we are now subject to. The recent explosion of digital technologies that are turning us into a series of algorithmic data points is shown to have a deeper and more turbulent past than we commonly think. Blending philosophy, history, political theory, and media theory in conversation with thinkers like Michel Foucault, Jürgen Habermas, and Friedrich Kittler, Koopman presents an illuminating perspective on how we have come to think of our personhood—and how we can resist its erosion. (shrink)

A current trend in bioethics considers genetic information as family property. This paper uses a logical approach to critically examine Matthew Liao’s proposal on the familial nature of genetic information as grounds for the duty to share it with relatives and for breach of confidentiality by the geneticist. The authors expand on the topic by examining the relationship between the arguments of probability and the familial nature of genetic information, as well as the concept of harm in the context of (...) genetic risk. Lastly, they examine the concept of harm in relation to the type of situations w the potential recipient of the information is not the person directly affected by the risk. (shrink)

The paper explores a metaphysics of information enriched by a computational view of Buddhism consistent with onto-ethics. To the extent that Floridi has explained the new philosophy of information as borrowing methods from computer science to approach philosophical problems computationally, I believe an applied philosophy of information can return the fruits of these results back to grounding issues in the practices of information technology. With this process we also foster a cross-fertilization between Eastern and Western philosophies, in the larger, intercultural (...) arena. (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 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)

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)

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)

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)

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)

Purpose Human genomic research demands very large pools of data to generate meaningful inference. Yet, the sharing of one’s genetic data for research is a voluntary act. The collection of data sufficient to fuel rapid advancement is contingent on individuals’ willingness to share. Privacy risks associated with sharing this unique and intensely personal data are significant. Genetic data are an unambiguous identifier. Public linkage of donor to their genetic data could reveal predisposition to diseases, behaviors, paternity, heredity, intelligence, etc. The (...) purpose of this paper is to understand individuals’ willingness to volunteer their private information in this high-risk/high-reward context. Design/methodology/approach The authors collect survey data from 273 respondents and use structural equation modeling techniques to analyze responses. Findings The authors find statistical support for our theorization. They find that while heightened awareness of the benefits and risks of sharing correlates with increased privacy concerns, the net impact is an increase in intention to share. Social implications The findings suggest that prescriptive awareness might be an effective tool with which policy-makers can gain the sufficient voluntary participation from individuals necessary to drive large-scale medical research. Originality/value This study contributes a theoretically and empirically informed model which demonstrates the impact of awareness and privacy concern on individuals’ willingness to share their genetic data for large-scale HGR. It helps inform a rising class of data sufficiency problems related to large-scale medical research. (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)

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)

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)

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)

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)

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)

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)

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)

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.

The aim of the paper is that of investigating the concept of “person” in the context of Italian law on informed consent and advance healthcare directives. The following paper will first consider the importance of the concept of “person” within bioethics; secondly it will exhibit how there are different levels of bioethics, and that on the discussion level of laws and regulations, concepts worthy of metaphysical and value references cannot be used, because they must be shared by everyone (...) in a pluralistic society. I’ll then move on to discuss the law on informed consent and advance healthcare directives; first I’ll discuss the references to the Italian Constitution, showing that the implied concept of “person” is closely linked to the concepts of “equality” and “autonomy”, and finally I’ll discuss the particular case of minors and the protection that the law provides them. (shrink)

Background It has been suggested that researchers are obliged to offer summary findings to research participants to demonstrate respect for persons, and that this may increase public trust in, and awareness of, the research enterprise. Yet little research explores researchers' attitudes and practices regarding the range of initiatives that might serve these ends. Methods Results of an international survey of 785 eligible authors of genetics research studies in autism or cystic fibrosis are reported. Results Of 343 researchers who completed the (...) survey (44% response rate), the majority agreed that their team should (i) inform participants of summary findings (90.7%) and (ii) ensure they gain an awareness of developments in the field (86.9%). Additionally, the majority reported that in practice, their team (i) informs participants of summary findings (69.4%) and (ii) provides other types of relevant non-results information (eg, state of science in the field, opportunities for research participation) (67.9%). Conclusion Researchers endorsed the obligation of communicating with research participants by providing summary findings and other research-related information in equal measure. In light of these findings, it is suggested that while the provision of summary results may contribute to efforts to discharge the obligation of respect for persons, it may be neither a necessary nor a sufficient means to this end. (shrink)

The shared circuits model (SCM) relies on well-regarded theories of perception-action, mirror neurons, and forward models, but the functional/informational level of the model limits its ability to explain complex behavior such as true imitation. Data from our lab and others confirm the more general details of the model, accepted by most, but specify the neural mechanisms involved in perception-action processes.

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)

According to what we propose to call “the competence model,” competence is a necessary condition for valid informed consent. If a person is not competent to make a treatment decision, the decision must be made by a substitute decision-maker on her behalf. Recent reports of various United Nations human rights bodies claim that article 12 of the Convention on the Rights of Persons with Disabilities involves a wholesale rejection of this model, regardless of whether the model is based on (...) a status, outcome, or functional approach to competence. The alleged rationale of this rejection is that denying persons the right to make their own treatment decisions based on an assessment of competence necessarily discriminates against persons with mental disorders. Based on a philosophical account of the nature of discrimination, we argue that a version of the competence model that combines supported decision-making with a functional approach to competence does not discriminate against persons with mental disorders. Furthermore, we argue that status- and outcome-based versions of the competence model are discriminatory. (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)

In an explicit attempt to reduce physician paternalism and encourage patient participation in making health care decisions, the informed consent doctrine has become a foundational precept in medical ethics and health law. The underlying ethical principle on which informed consent rests — autonomy — embodies the idea that as rational moral agents, patients should be in command of decisions that relate to their bodies and lives. The corollary obligation of physicians to respect and facilitate patient autonomy is reflected in the (...) rules that have been created to implement consent procedures, especially those requiring disclosure of relevant information.However, there are many practical impediments to patient self-determination in health care decisionmaking. Well-meaning physicians often lack the time to live up to the ideal of facilitating genuine, informed deliberation with and by their patients, and many lack the motivation or skill to do so successfully. (shrink)

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)

Since its advent, predictive DNA testing has been perceived as a technology that may have considerable impact on the quality of people’s life. The decision whether or not to use this technology is up to the individual client. However, to enable well considered decision making both the negative as well as the positive freedom of the individual should be supported. In this paper, we argue that current professional and public discourse on predictive DNA-testing is lacking when it comes to supporting (...) positive freedom, because it is usually framed in terms of risk and risk management. We show how this ‘risk discourse’ steers thinking on the good life in a particular way. We go on to argue that empirical research into the actual deliberation and decision making processes of individuals and families may be used to enrich the environment of personal deliberation in three ways: (1) it points at a richer set of values that deliberators can take into account, (2) it acknowledges the shared nature of genes, and (3) it shows how one might frame decisions in a non-binary way. We argue that the public sharing and discussing of stories about personal deliberations offers valuable input for others who face similar choices: it fosters their positive freedom to shape their view of the good life in relation to DNA-diagnostics. We conclude by offering some suggestions as to how to realize such public sharing of personal stories. (shrink)

Information technology has played a remarkably important role in developing the contemporary educational system. It not only provides easy access to enormous stores of information but also increases students' scientific efficiency. However, the availability of this technology has also led to increased plagiarism. This study attempted to explore how access to Internet technology contributes to plagiarism problems from the perspective of university students in Iran. A qualitative method to semistructured interviews with 20 students suggested important themes: uncertainty avoidance, tendency to (...) use shortcuts to progress, symbolic certification, social learning and modeling of faculty members as mentors, and plagiarism in the name of justice. Survey data from 180 university students suggest that the personality characteristic of conscientiousness had a negative effect on using information technology to commit plagiarism. (shrink)

Psychopathy is increasingly in the public eye. However, it is yet to be fully and effectively understood. Within the context of the DSM-IV, for example, it is best regarded as a complex family of disorders. The upside is that this family can be tightly related along common dimensions. Characteristic marks of psychopaths include a lack of guilt and remorse for paradigm case immoral actions, leading to the common conception of psychopathy rooted in affective dysfunctions. An adequate portrait of psychopathy is (...) much more complicated, however. Though some neural regions and corresponding functions are commonly indicated, they range across those responsible for action planning and learning, as well as emotional processes. Accordingly, a complete fine-grained map of all neural mechanisms responsible for psychopathy has not been realized, and even if it were, such a map would have limited utility outside of the context of surgical or chemical intervention. The utility of a neural-level understanding of psychopathy is further limited by the fact that it is only applicable in the clinical identification of individual subjects, and the neuro-chemical/biological correction of those subjects after they are positively identified as psychopaths. On the other hand, an information processing model of moral cognition provides for wider-ranging applications. The theoretical and practical implications for such a feasible working model of psychopathic personalities are assessed. Finally, this chapter raises the possibility of directed modification of social-environmental factors (including at the meta-organizational level) discouraging the development of psychopathic personalities in the first place, modifications which are also open to simulation and testing in terms of the same model of moral cognition. (shrink)

Background Immense volumes of personal health information are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: broad versus specific consent; opt-in versus opt-out approaches; comfort level sharing with different recipients; attitudes towards commercialization; and options to track PHI use and study results. Results 222 participants were included in the analysis; (...) 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients were more uncomfortable than older patients. While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients. Approximately half of patients were uncomfortable sharing PHI with commercial enterprises. Most patients preferred to track PHI usage, with the highest proportion once again reported by the youngest patients. A majority of patients also wished to be notified regarding study results. Conclusions While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research. (shrink)

The price of sequencing all the DNA in a person's genome is falling so fast that, according to one biotech leader, soon it won't cost much more than flushing a toilet. Getting all that genomic data at an ever‐lower cost excites the imaginations not only of biotech investors and researchers but also of the President and many members of Congress. They envision the data ushering in an age of “personalized medicine,” where medical care is tailored to persons’ genomes. The (...) new name “precision medicine” should not distract us from the fact that the genomic information it depends on is more complex, uncertain, and ambiguous than anyone had hoped, nor should it distract us from an important ethical point. Unfortunately, several developments of the last fifteen years suggest that, in our excitement about the technological capacity to gather genomic data at an ever lower cost, we are drifting away from what has long been a basic ethical commitment: to offer persons a process that enables them to provide informed consent before they or anyone else accesses their genetic information. (shrink)

A predicate of personal taste occurring in a sentence in which the perspectival information is not linguistically articulated by an experiencer phrase may have two different readings. In case the speaker of a bare sentence formed with a predicate of personal taste uses the subjective predicate encoding perspectival information in one way and the hearer interprets it in another way, the agents’ acts are not coordinated. In this paper I offer an answer to the question of how a hearer can (...) strategically interact with a speaker on the intended perspectival information so that both agents can optimally solve their coordination problem. In this sense, I offer a game-theoretical account of the strategic communication with expressions referring to agents’ perspectives, communication which involves the interaction between a speaker who intends to convey some perspectival information and who chooses to utter a bare sentence formed with a predicate of personal taste, instead of a sentence in which the perspectival information is linguistically articulated by an experiencer phrase, and a hearer who has to choose between interpreting the uttered sentence in conformity with the speaker’s autocentric use of the predicate of personal taste or in conformity with the speaker’s exocentric use. (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)

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 focus of this book is to explore teachers' evolving personal epistemologies, or the beliefs we hold about the origin and development of knowledge in the context of teaching. The chapters focus on a range of conceptual frameworks about how university and field-based experiences influence the connections between teachers' personal epistemologies and teaching practice. In an earlier volume we investigated ways in which we might change preservice teachers' beliefs and teaching practice (Brownlee, Schraw and Berthelsen, 2011). While we addressed the (...) nature of teachers' personal epistemology, learning and teaching practices, and approaches for changing beliefs throughout teacher education programs, the volume did not address conceptual frameworks for the development of teacher's personal epistemologies. The book is focused on teacher educators, teachers and teacher education programmers in universities with an overall aim of highlighting how we might support students to engage in learning that is challenging and to engage in professional experiences that promote changes in teaching practice. We argue that students need to be encouraged to question their beliefs and develop increasingly sophisticated beliefs about their knowledge and their students' knowledge that facilitate learning and intellectual growth. (shrink)

This manuscript describes the responses and correlates of outpatients with schizophrenia spectrum disorders to a tool designed to measure comprehension before obtaining informed consent for research participation. We used the Evaluation to Sign Consent form to document comprehension in 100 outpatients as part of their consent to participate in an ongoing study of an exercise intervention. The findings suggest that using this form is a feasible and acceptable approach to documenting comprehension of research procedures prior to obtaining informed consent. Age (...) 49 years and older and the receipt of intramuscular antipsychotic medication predicted the need for additional assistance to complete the Evaluation to Sign Consent form successfully (χ2 = 8.29, P = 0.016). Nurse researchers should consider documenting comprehension with this tool owing to its availability, time efficiency and utility. (shrink)