This article provides an answer to the question: What is the function of cognition? By answering this question it becomes possible to investigate what are the simplest cognitive systems. It addresses the question by treating cognition as a solution to a design problem. It defines a nested sequence of design problems: (1) How can a system persist? (2) How can a system affect its environment to improve its persistence? (3) How can a system utilize better information from the environment (...) to select better actions? And, (4) How can a system reduce its inherent informational limitations to achieve more successful behavior? This provides a corresponding nested sequence of system classes: (1) autonomous systems, (2) (re)active autonomous systems, (3) informationally controlled autonomous systems (autonomous agents), and (4) cognitive systems. -/- This article provides the following characterization of cognition: The cognitive system is the set of mechanisms of an autonomous agent that (1) allow increase of the correlation and integration between the environment and the information system of the agent, so that (2) the agent can improve the selection of actions and thereby produce more successful behavior. -/- Finally, it shows that common cognitive capacities satisfy the characterization: learning, memory, representation, decision making, reasoning, attention, and communication. (shrink)

Many accounts of informed consent in medical ethics claim that it is valuable because it supports individual autonomy. Unfortunately there are many distinct conceptions of individual autonomy, and their ethical importance varies. A better reason for taking informed consent seriously is that it provides assurance that patients and others are neither deceived nor coerced. Present debates about the relative importance of generic and specific consent do not address this issue squarely. Consent is a propositional attitude, so intransitive: complete, wholly specific (...) consent is an illusion. Since the point of consent procedures is to limit deception and coercion, they should be designed to give patients and others control over the amount of information they receive and opportunity to rescind consent already given. (shrink)

In this essay collection, leading physicists, philosophers, and historians attempt to fill the empty theoretical ground in the foundations of information and address the related question of the limits to our knowledge of the world. Over recent decades, our practical approach to information and its exploitation has radically outpaced our theoretical understanding - to such a degree that reflection on the foundations may seem futile. But it is exactly fields such as quantum information, which are shifting the (...) boundaries of the physically possible, that make a foundational understanding of information increasingly important. One of the recurring themes of the book is the claim by Eddington and Wheeler that information involves interaction and putting agents or observers centre stage. Thus, physical reality, in their view, is shaped by the questions we choose to put to it and is built up from the information residing at its core. This is the root of Wheeler's famous phrase "it from bit." After reading the stimulating essays collected in this volume, readers will be in a good position to decide whether they agree with this view. (shrink)

This paper argues that it will be important for new genomic technologies to recognize the limits of traditional approaches to informed consent, so that other-regarding implications of genomic information can be properly contextualized and individual rights respected. Respect for individual autonomy will increasingly require dynamic consideration of the interrelated dimensions of individual and broader community interests, so that the interests of one do not undermine fundamental interests of the other. In this, protection of individual rights will be a complex (...) interplay between individual and community concerns. (shrink)

People in extraordinary situations are vulnerable. As research participants, they are additionally threatened by abuse or exploitation and the possibility of harm through research. To protect people against these threats, informed consent as an instrument of self-determination has been introduced. Self-determination requires autonomous persons, who voluntarily make decisions based on their values and morals. However, in nursing research, this requirement cannot always be met. Advanced age, chronic illness, co-morbidity and frailty are reasons for dependencies. These in turn lead to limited (...) abilities or opportunities for decision-making and self-determination. Exclusion of vulnerable people from research projects would disadvantage them by not covering their needs, which would violate the ethical principles of justice and beneficence. Commonly, vulnerability is attributed to social groups. The consequence for individuals, attributed as belonging to such a vulnerable group, is that the principles of respect for autonomy, justice and beneficence are subordinated to the principle of non-maleficence, understood as avoiding the risk to cause more harm than good. In addition, group-specific attribution could lead to stigmatizing because labelling a person as deviation from a norm violates integrity. For clinical nursing research, the question arises how the protection of vulnerable people could be granted without compromising ethical principles. The concept of relational ethics provides a possible approach. It defines vulnerability as the relation between a person’s health status and the extent to which this person is dependent on the researcher and the research context. Vulnerability is not attributed solely to a person but to a situation, meaning the person is viewed in context. By combining vulnerability as a context-related and situational concept with existing approaches of informed consent, the different ethical principles can be balanced and preserved at every step of the research process. (shrink)

An issue about the privacy of the clustered groups designed by algorithms arises when attempts are made to access certain pieces of information about those groups that would likely be used to harm them. Therefore, limitations must be imposed regarding accessing such information about clustered groups. In the discourse on group privacy, it is argued that the right to privacy of such groups should be recognised to respect group privacy, protecting clustered groups against discrimination. According to this viewpoint, (...) this right places a duty on others, for example, private companies, institutions, and governments, to refrain from accessing such information. To defend the idea that the right to privacy should be recognised for clustered groups, at least two requirements must be satisfied. First, clustered group privacy must be conceived of as either a collective good or a participatory good. Since these forms of good are of the type from which no member of a group can be excluded from benefiting, the right to them is defined as a group right. Second, there must be group interests on which to base a group right. Group interests can be either the interests of those members that are a result of their being in the group or the interests of the group as a whole that transcend the interests of its members. However, this paper argues that clustered group privacy cannot be conceived of as either a collective or a participatory good because it is possible for some individuals to be excluded from benefiting from it. Furthermore, due to the lack of awareness among individuals that they are members of a clustered group and the nature of a clustered group itself, such groups cannot have the group interests necessary to establish a group right. Hence, the group right to privacy cannot be recognised for these groups, implying that the group right cannot be considered a means to protect clustered groups against discrimination. Instead, this paper suggests that moral principles need to be articulated within an ethics of vulnerability to identify the moral obligations of protecting vulnerable clustered groups. The duty owed to the vulnerable should involve refraining from accessing certain information about clustered groups in specific contexts. This duty is not engendered by the right to privacy of such groups; it is the duty owed to the vulnerable. The findings highlight the need to articulate moral principles regarding privacy and data protection to protect clustered groups in contexts in which accessing information about them could constitute a reason for discriminatory targeting. (shrink)

According to this paper, respect for informed consent implies that subjects should often be told a good deal more than ethical guidelines explicitly or implicitly require. Unless subjects are informed of the researchers’ personal characteristics, views, and sponsors whenever they would be likely to consider them significant, their autonomy is being overridden. However, overriding subjects’ autonomy is sometimes required by the interests of researchers in not being discriminated against or suffering intrusions into their privacy. This paper resolves the conflict between (...) informed consent and the interests of researchers by recommending that (i) subjects generally should be told of the personal characteristics of researchers when relevant as part of the researchers’ job and (ii) that subjects should be told of researchers’ views when conceptually connected to the research and (iii) that subjects should almost always be told about sponsorship. While the paper explicitly limits the role of informed consent, these recommendations go significantly beyond most guidelines in their requirements about what information should be disclosed. (shrink)

The concept of biological information, and information in general, usually presupposes a purely quantitative view of reality. Even though actualist quantification has an important place in the description of the world, a nominalistic stance that tries to simplify reality in purely actualist terms inevitably runs into inconsistencies; these inconsistencies have been pointed out by the critical assessments of the notion of biological information. Rather than calling for an abandonment of the informational terminology, we try to rethink (...) class='Hi'>information as a part of an event, the description of which cannot be exhausted by a physicalist, mechanistic, temporally static view of reality. Reconceptualizing the notion of biological information in terms of a process of interpretation rather than as an informational object allows us to transcend the limitations imposed by an analysis of reality that depends on a fixed, finite structure of outcome. Thus, we argue that measuring biological information is intrinsically problematic. (shrink)

Down syndrome (Trisomy 21) is a mild to moderate intellectual disability. Historically, this condition has been a primary target for prenatal testing. However, Down syndrome has not been targeted for prenatal testing because it is an especially severe illness. The condition was just one that could be easily identified prenatally using the techniques first available decades ago. We are moving into an era in which we can prenatally test for a vast range of human traits. I argue that when we (...) can test for anything, there is no longer any reason to continue targeting Down syndrome. I present an argument based on the value of nondiscrimination. It is justified to set limits on access to prenatal information if the information is going to be used for discriminatory purposes. I use the examples of (1) prenatal testing for misogynistic fetal sex selection, and (2) homophobia-motivated prenatal testing for potential homosexuality, as compelling analogies. (shrink)

Empirical findings from a Swedish longitudinal screening study show that many of the research subjects had a limited understanding of the study. Nevertheless they were satisfied with the understanding they had and found it sufficient for informed continued participation. Were they wrong? In this paper, it is argued that the kind of understanding that is morally required depends partly on the kind of understanding on which the research subjects want to base their decisions, and partly on what kind of knowledge (...) they lack. Researchers must ensure that the information process is not flawed and that participants receive the information they want. To achieve this, new information efforts may be needed. Researchers must also ensure that research subjects have knowledge about aspects of importance to them. Lack of understanding may, however, be the result of conscious choices by research subjects to disregard some of the information because it is not important to them. Such choices should normally be respected. (shrink)

Information is a unique resource. Asymmetries that arise out of information access or processing capacities, therefore, enable a distinctive form of injustice. This paper builds a working conception of such injustice and explores it further. Let us call it informational injustice. Informational injustice is a consequence of informational asymmetries between at least two agents, which are deeply exacerbated due to modern information and communication technologies but do not necessarily originate with them. Informational injustice is the injustice of (...) having information from an informational surplus being used to disadvantage the agent with less information. -/- This paper argues that informational injustice exploits an agent as a knower, specifically exploiting the agent’s limitation in possessing or processing information—an agent is exploited because she is not informed or lacks in her ability to process information. In the case of lack of information, the agent simply does not know the information under consideration; a person is algorithmically manipulated or nudged to buy a product or vote for someone. In the case of a lack of capacity to process information, the agent simply cannot use the information, despite having access to it, to reach epistemically valuable states such as knowledge; a lawyer dupes you because he knows more about the inner workings of a courtroom and the law. Technically, you have access to the information your lawyer has, but you cannot make use of it due to constraints on time and cognitive effort. Informational injustice excludes the harmed agent from participating in knowledge practices. Thus, informational injustice is also a kind of epistemic exclusion. -/- After fixing the concept of informational injustice, the paper distinguishes between two kinds of informational injustices: interactional informational injustice and structural informational injustice. The former concerns interactions between agents, while the latter concerns social structures that emerge out of interactions between agents. (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)

Classical systems of mereology identify a maximuml set of jointly exhaustive and pairwise disjoint (RCC5) relations. The amount of information that is carried by each member of this set of (crisp) relations is determined by the number of bits of information that are required to distinguish all the members of the set. It is postulated in this paper, that vague mereological relations are limited in the amount of information they can carry. That is, if a crisp mereological (...) relation can carry N bits of information, then a vague mereological relation can carry only 1 ⩽ n < N bits. The aim of this paper is it to explore these ideas in the context of various systems of vague mereological relations. The resulting formalism is non-classical in the sense of quantum information theory. (shrink)

Access to clear and concise medication information is essential to support safe and effective use of prescription drugs. Patient misunderstanding of medication information is a common reason for non-adherence to medication regimens and a leading cause of outpatient medication errors and adverse drug events in the U.S. Medication errors are the most common source of risk to patient safety, leading to poor health outcomes, hospitalizations, and deaths. Over half a million adverse drug events occur in the outpatient setting (...) each year at a cost of approximately $1 billion annually.Nearly half of adults in the U.S. experience difficulty understanding and acting upon health information. Even individuals with high levels of general literacy may find medication information difficult to understand or use. The risk of misunderstanding medication information is compounded for patients with limited English proficiency who may not have access to this information in their own language. (shrink)

Differences in perception and potential disagreements between parents and professionals regarding the attitude for resuscitation at the limit of viability are common. This study evaluated in healthcare professionals whether the decision to resuscitate at the limit of viability are influenced by the way information on incurred risks is given or received. This is a prospective randomized controlled study. This study evaluated the attitude of healthcare professionals by testing the effect of information given through graphic fact sheets (...) formulated either optimistically or pessimistically. The written educational fact sheet included three graphical presentations of survival and complication/morbidity by gestational age. The questionnaire was submitted over a period of 4 months to 5 and 6-year medical students from the Geneva University as well as physicians and nurses of the neonatal unit at the University Hospitals of Geneva. Our sample included 102 healthcare professionals. Forty-nine responders were students, 32 paediatricians and 21 nurses in NICU. The received risk tended to be more severe in both groups compared to the graphically presented facts and current guidelines, although optimistic representation favoured the perception of “survival without disability” at 23 to 25 weeks. Therapeutic attitudes did not differ between groups, but healthcare professionals with children were more restrained and students more aggressive at very low gestational ages. Written information on mortality and morbidity given to healthcare professionals in graphic form encourages them to overestimate the risk. However, perception in healthcare staff may not be directly transferable to parental perception during counselling as the later are usually naïve to the data received. This parental information are always communicated in ways that subtly shape the decisions that follow. (shrink)

Purpose The purpose of this paper is to describe and explore the current state of internet regulation through content filters in Swedish public libraries. Design/methodology/approach Data was collected through an electronic survey directed to library managers of Sweden’s 290 main municipal libraries. 164 answers were returned, yielding a 57% response rate. The analysis comprises descriptive statistics for quantitative data and an activity theory approach with focus on contradictions for qualitative counterparts. Findings In total, 33% of the responding libraries report having (...) content filters; 50% have not; and a surprising 18% do not know. There is a strong correlation between internet misuse and positive attitudes towards filters, and, reversely, between lack of misuse and lack of active stances concerning filters. Rather than seeing this as weakness, the authors suggest that there is strength in a context-bound flexibility open to practical experience and weighting of values, ethics, legislation and local circumstances. More troublesome indications concern the high deferral of decision-making to local authorities (municipalities) whereby libraries are left with limited insight and influence. Research limitations/implications The situation calls for professional organisations to address political mandate questions, and educational programs to strengthen future information professionals’ knowledge of IT in general; filter issues in specific; and local authority decision-making. The study highlights the need of adequate information professional competences and mandates to decide on and oversee internet regulation. Originality/value To the best of the authors’ knowledge, this is the first internationally published study on content filters in Swedish public libraries. (shrink)

Black holes have their own thermodynamics including notions of entropy and temperature and versions of the three laws. After a light introduction to black hole physics, I recollect how black hole thermodynamics evolved in the 1970s, while at the same time stressing conceptual points which were given little thought at that time, such as why the entropy should be linear in the black hole's surface area. I also review a variety of attempts made over the years to provide a statistical (...) mechanics for black hole thermodynamics. Finally, I discuss the origin of the information bounds for ordinary systems that have arisen as applications of black hole thermodynamics. (shrink)

Though we have access to a wealth of information, the main issue is always how to process the available information. How to make sense of all we observe and know. Just like the English alphabet: we know there are 26 letters but unless we put these letters together in a meaningful way, they convey no information. There are infinitely many ways of putting these letters together. Only a small number of those make sense. Only some of those (...) convey exactly what we wish to convey though the message may be interpreted differently by different individuals. That same issue comes up with information: how can we process the information we have? How can we infer and reason under conditions of incomplete observed information? In his seminal book on the philosophy of information, Floridi (2011a) raises a number of open questions. I discuss here one of these questions. That question is how to process information. To do so, I take the more realistic view that information is always limited, incomplete and possibly noisy. I define types of information, relate it to Floridi’s definitions and discuss a basic formulation for processing information under a unified framework. I relate it to some of the basic concepts discussed in the book. (shrink)

Obtaining ‘informed consent’ from every individual participant involved in health research is a mandatory ethical practice. Informed consent is a process whereby potential participants are genuinely informed about their role, risk and rights before they are enrolled in the study. Thus, ethics committees in most countries require ‘informed consent form’ as part of an ethics application which is reviewed before granting research ethics approval. Despite a significant increase in health research activity in low-and middle-income countries in recent years, only limited (...) work has been done to address ethical concerns. Most ethics committees in LMICs lack the authority and/or the capacity to monitor research in the field. This is important since not all research, particularly in LMICs region, complies with ethical principles, sometimes this is inadvertently or due to a lack of awareness of their importance in assuring proper research governance. With several examples from Nepal, this paper reflects on the steps required to obtain informed consents and highlights some of the major challenges and barriers to seeking informed consent from research participants. At the end of this paper, we also offer some recommendations around how can we can promote and implement optimal informed consent taking process. We believe that paper is useful for researchers and members of ethical review boards in highlighting key issues around informed consent. (shrink)

In order to avoid patient abuse, under normal situations before performing a medical intervention on a patient, a physician must obtain informed consent from that patient, where to give genuine informed consent a patient must be competent, understand her condition, her options and their expected risks and benefits, and must expressly consent to one of those options. However, many patients refrain from the option that their physician believes to be best, and many physicians worry that their patients make irrational healthcare (...) decisions, hindering their ability to provide efficient healthcare for their patients. Some philosophers have proposed a solution to this problem: they advocate that physicians nudge their patients to steer them towards their physician's preferred option. A nudge is any influence designed to predictably alter a person's behavior without limiting their options or giving them reasons to act. Proponents of nudging contend that nudges are consistent with obtaining informed consent. Here I argue that nudging is incompatible with genuine informed consent, as it violates a physician's obligation to tell their patients the truth, the whole truth, and nothing but the truth during adequate disclosure. (shrink)

“Informed consent” implicitly links the transmission of information to the granting of permission on the part of patients, tissue donors, and research subjects. But what of the corollary, informed refusal? Drawing together insights from three moments of refusal, this article explores the rights and obligations of biological citizenship from the vantage point of biodefectors—those who attempt to resist technoscientific conscription. Taken together, the cases expose the limits of individual autonomy as one of the bedrocks of bioethics and suggest the (...) need for a justice-oriented approach to science, medicine, and technology that reclaims the epistemological and political value of refusal. (shrink)

There are those philosophers and historians of science who claim that the acceptance and rejection of scientific theories is underdetermined by experimental results. They conclude that there is no rational method for deciding such matters solely on the basis of empirical information. The acceptance and rejection of scientific theories depends on social influence and is settled by social dominance. This I call the dominance thesis. There are also those who hold, on the contrary, that the acceptance and rejection of (...) theories in science is based solely on empirical information according to a rational method. They conclude that the acceptance and rejection of scientific theories is fully determined by experimental results. This I call the experimentalism thesis. The dominance thesis and the experimentalism thesis are both false. Both share a common premise, to wit, that empirical information is limited to experimental results. There is, however, another source of empirical information, the opinions of experts. When such social information is properly aggregated, the acceptance and rejection of scientific theories, though underdetermined by experimental results, is fully determined by the total information available. (shrink)

This paper argues that Information Theoretic Redundancy (ITR) is fundamentally a composite concept that has been continually misinterpreted since the very inception of Information Theory. We view ITR as compounded of true redundancy and partial redundancy. This demarcation of true redundancy illustrates a limiting case phenomenon: the underlying metric (number of alternatives) differs only by degree but the properties of this concept differ in kind from those of partial redundancy. Several other studies are instanced which also imply the (...) composite nature of ITR. We thus provide broadly based but particular support for earlier generalized suggestions that it is the underlying calculus of Information Theory rather than the ill-named concepts themselves that provides something of a unitary language for the description of phenomena. (shrink)

The article covers electronic informed consent from different dimensions so that practitioners might understand the history, regulation, and current status of eIC. It covers the transition of informed consent to electronic screens and the implications of that transition in terms of design, costs, and data analysis. The article explores the limits of regulation mandating eIC for mobile application research, and addresses some of the broader social context around eIC.

Purpose This study aims to ascertain the impact of data collecting awareness on perceived information security concerns and information-sharing behavior on social networking sites. Design/methodology/approach Based on communication privacy management theory, the study forecasted the relationship between information-sharing behavior and awareness of data collecting purposes, data collection tactics and perceived security risk using structural equation modeling analysis and one-way ANOVA. The sample size of 521 young social media users in Vietnam, ages 18 to 34, was made up (...) of 26.7% men and 73.3% women. When constructing the questionnaire survey method with lone source respondents, the individual’s unique awareness and experiences with using online social networks (OSNs) were taken into account. Findings The results of the investigation demonstrate a significant relationship between information-sharing and awareness of data collecting, perceptions of information security threats and behavior. Social media users have used OSN privacy settings and paid attention to the sharing restriction because they are concerned about data harvesting. Research limitations/implications This study was conducted among young Vietnamese social media users, reflecting specific characteristics prevalent in the Vietnamese environment, and hence may be invalid in other nations’ circumstances. Practical implications Social media platform providers should improve user connectivity by implementing transparent privacy policies that allow users to choose how their data are used; have clear privacy statements and specific policies governing the use of social media users’ data that respect users’ consent to use their data; and thoroughly communicate how they collect and use user data while promptly detecting any potential vulnerabilities within their systems. Originality/value The authors ascertain that the material presented in this manuscript will not infringe upon any statutory copyright and that the manuscript will not be submitted elsewhere while under Journal of Information, Communication and Ethics in Society review. (shrink)

Respect for autonomy has become a fundamental principle in human research ethics. Nonetheless, this principle and the associated process of obtaining informed consent do have limitations. This can lead to some groups, many of them vulnerable, being left understudied. This book considers these limitations and contributes through legal and philosophical analyses to the search for viable approaches to human research ethics. It explores the limitations of respect for autonomy and informed consent both in law and through the examination of cases (...) where autonomy is lacking (infants), diminished (addicts), and compromised (low socio-economic status). It examines alternative and complementary concepts to overcome the limits of respect for autonomy, including beneficence, dignity, virtue, solidarity, non-exploitation, vulnerability and self-ownership. It takes seriously the importance of human relationality and community in qualifying, tempering and complementing autonomy to achieve the ultimate end of human research - the good of humankind. (shrink)

Contemporary Information Systems management incorporates the need to make explicit the links between semiotics, meaning-making and the digital age. This focus addresses, at its core, pure rationality, that is, the capacity of human interpretation and of human inscription upon reality. Creating the new real, that is the motto. Humans are intrinsically semiotic creatures. Consequently, semiotics is not a choice or an option but something that works like a second skin, establishing limits and permeable linkages between: human thought and human's (...) infinite world of imagination; and human action, with its correspondent infinite world of intentionality, of desire and of unexplored possibilities. Two instances are contrasted as two reading lenses of current business reality: IS governance and industry 4.0. These phenomena correspond to the need to take accountability, transparency and responsibility into account, when designing IS and when using such systems through the ecology of connectivity, Big Data and the Internet of Things. Political, social and cultural dimensions are brought into the equation, when addressing the question of the relevance and adequateness of IS theory and practice to respond to contemporary challenges. The message is that what has already been achieved is but a shadow, a pale vision, of what might be achieved in the age of the new Renaissance. (shrink)

The information-theoretic Bell inequalities of Braunstein and Caves are studied in relation to the concept of the relative probability measure which one allows to overcome the limitations of the considered theorem.

Being the parents of a premature infant can be extremely stressful. Even when parents know that there is a high chance of premature birth, they are often in shock when their infant arrives too earl...

Numerous laws have passed to move away from criminalising youth who trade sex. Specialised courts have also been established to support youth. Despite proponents' contention that specialised, trauma-informed courts are less punitive than typical interventions, research is limited. This article explores one specialised dependency court's efforts to assist youth ‘at risk’. Drawing on interviews and ethnographic observations, I argue that laws and trauma-informed court interventions intensify the supervision of youth and families while inadvertently concealing the gendered-racialised effects of child welfare (...) system involvement. Ethnographic findings contribute to sociolegal and anti-carceral feminist research on carceral control beyond the criminal legal system. This work also explores the ethics of carceral-trauma entanglements that accompany decriminalisation’s afterlife. (shrink)

The informed consent process provides protection by ensuring that potential research subjects understand the goals of the research project they are being asked to voluntarily partake in as well as the risks associated with the study. We examined subjects' comprehension and ability to identify issues explicitly raised during the consent process that was conducted as part of their participation in a genetic family study (GFS). We employed cross-sectional design by providing a short, self-administrative questionnaire to 246 participants recruited from families (...) enrolled in the Extended Family Investigation of Nephropathy and Diabetes (EFIND) study conducted at the University of Texas Health Science Center. Participants responded to the questionnaire directly after their enrollment in the EFIND study. The questionnaire consisted of multiple-choice questions and focused on the understanding of the purposes, procedures, and risks associated with their participation in the EFIND study. These questions were formulated to reflect basic information presented to subjects through the consent process. Responses to questions were expressed as percentages, placing equal weight on each response. Participants were Mexican-American, 62.3% female and averaged 35.2 ± 12.7 years old (range: 18-76). Our findings showed that the average comprehension score was 58. About 30% of the participants did not know the name of the study, and 70% did not identify all elements related to the study procedures. The most striking finding was the lack of understanding concerning the social risks associated with participation in EFIND. While 35.1% of participants identified all potential physical risks, only 1.3% could identify all of the social risks. Our findings showed that participants comprehension score was significantly associated with their level of education and income. We conclude that using the informed consent process to communicate research social risks to subjects participating in GFS has some limitations. Future research directed at improving risk communications to subjects of low socioeconomic levels participating in genetic research is justified. (shrink)

BackgroundThe Western-European concept of libertarian rights-based autonomy, which advocates respect for individual rights, may conflict with African cultural values and norms. African communitarian ethics focuses on the interests of the collective whole or community, rather than rugged individualism. Hence collective decision-making processes take precedence over individual autonomy or consent. This apparent conflict may impact informed consent practice during biomedical research in African communities and may hinder ethical principlism in African bioethics. This study explored African biomedical researchers' perspectives regarding informed consent (...) and potential limitations to the principle of respect for autonomy in African communities.MethodsWe conducted a qualitative study based on in-depth interviews with 12 biomedical researchers, five females and seven males aged 34 to 74 years, currently working at an African university. Interviews lasted 35–40 min each and involved semi-structured open-ended interviews, which allowed participants to offer information about their perceptions and feelings regarding respect for autonomy and informed consent as practised in Africa. Empirical data from the interviews were recorded, transcribed, and analysed using thematic content analysis, together with an interrogation of relevant scientific literature about African communitarian ethics, making evaluations and drawing inferences consistent with the empirical bioethics approach.ResultsBased on these interviews and analysis of relevant literature, we found that informed consent is difficult to apply in an African context because it derives from a Western conception of libertarian rights-based autonomy. Most respondents pointed out that it was challenging to implement informed consent in the African setting. Furthermore, communalism, customary beliefs, spirituality, and relational autonomy are predominant in most African communities, as exemplified by the African moral philosophies of Ubuntu/botho and Ukama, which emphasize communitarianism over individual rights. We also found that language, education, poverty, and cultural beliefs are barriers to obtaining proper informed consent in African communities.ConclusionsWe conclude that there are limitations to applying the principle of respect for autonomy and informed consent in African communities, especially in the context of human biomedical research. We recommend using a more relational approach, such as Ross’s prima facie duties, to implement informed consent in African communities. (shrink)

The decision of the High Court in Bell v Tavistock has excited considerable discussion about lawful consent for puberty-blocking drug treatment for children with gender dysphoria. The present paper draws attention to a wider question that surfaces through this case: is informed decision-making an adequate practical tool for seeking and obtaining patients’ consent for medical treatment? Informed decision-making engages the premises of the rational choice theory: that people will have well-crystallised health goals; and, if they are provided with sufficient (...) class='Hi'>information about medical treatments, then they will be able to choose the treatment that satisfies their goals. Whilst appealing, the informed decision-making paradigm is assailed by various fallacies, which apply not only to children but also to adults. In Bell v Tavistock, the High Court seems to have recognised such fallacies, and it rejected informed decision-making as an adequate tool for consent from children with gender dysphoria. Similar considerations apply to adults in various situations. Thus, Bell v Tavistock can be seen as an attempt to refine the views on the consent that were expressed by the Supreme Court in Montgomery. It can be inferred that the Supreme Court did recognise the limitations of informed decision-making, but it did not develop this point. Further work is required to formulate an adequate model of decision-making, and Bell v Tavistock serves as a useful reminder to rethink informed decision-making as the device for consent. (shrink)

As the pace of technological change accelerates, we are increasingly experiencing a state of information overload. Statistics show that we are interrupted every three minutes during the course of the work day. Multitasking between email, cell-phone, text messages, and four or five websites while listening to an iPod forces the brain to process more and more informaton at greater and greater speeds. And yet the human brain has hardly changed in the last 40,000 years. Are all these high-tech advances (...) overtaxing our Stone Age brains or is the constant flood of information good for us, giving our brains the daily exercise they seem to crave? In The Overflowing Brain, cognitive scientist Torkel Klingberg takes us on a journey into the limits and possibilities of the brain. He suggests that we should acknowledge and embrace our desire for information and mental challenges, but try to find a balance between demand and capacity. Klingberg explores the cognitive demands, or "complexity," of everyday life and how the brain tries to meet them. He identifies different types of attention, such as stimulus-driven and controlled attention, but focuses chiefly on "working memory," our capacity to keep information in mind for short periods of time. Dr Klingberg asserts that working memory capacity, long thought to be static and hardwired in the brain, can be improved by training, and that the increasing demands on working memory may actually have a constructive effect: as demands on the human brain increase, so does its capacity. The book ends with a discussion of the future of brain development and how we can best handle information overload in our everyday lives. Klingberg suggests how we might find a balance between demand and capacity and move from feeling overwhelmed to deeply engaged. (shrink)

Despite the great expansion and many benefits of information and communication technologies in healthcare, the attitudes of Polish general practitioners to e-health have not been explored. The aim of this study was to determine the GPs’ perception of ICT use in healthcare and to identify barriers to the adoption of EMR in the Podlaskie Voivodeship. Online and telephone surveys were conducted between April and May 2013. Responses from 103 GP practices, 43% of all practices in the region, were analysed. (...) The results showed that 67% of the respondents agreed that IT systems improve quality of healthcare services. In the GP group who declared at least partial EMR implementation, 71.4% see the positive impact of IT on practice staff processes and 66.1% on personal working processes. In this group, more than three-quarters of GPs did not see any positive impact of ICT on the average number of patients treated per day, number of patients within the practice or scope of services. The four most common barriers to EMR implementation were: lack of funds, risk of a malfunction in the system, resistance to change, and lack of training and proper information. Although the use of ICT by Polish GPs is limited, their attitude to e-health is generally positive or neutral and resembles the overall pattern in Europe. Barriers identified by GPs need to be taken into account to ensure the effective implementation of e-health across the country. (shrink)

We will analyse the representations and conceptualisation of genetics and genetic information in bioethical discourse. Genetics and genetic information is widely believed to be revolutionizing medicine and is sometimes misconceived as having a high predictive value compared to traditional diagnostics. We will attempt to present the inherent limitations of genetic information within its health care context. We␣will also argue against the exceptional treatment of genetic information that seems to govern bioethical reflection and regulatory approaches. And finally, (...) we will make the claim that geneticization should be seen as a more serious threat to our privacy, autonomy and freedom, than genetic discrimination. (shrink)

People taking part in research vary in the extent to which they understand information concerning their participation. Since they may choose to limit the time and effort spent on such information, lack of understanding is not necessarily an ethical problem. Researchers who notice a lack of understanding are in the quandary of not knowing whether this is due to flaws in the information process or to participants’ deliberate choices. We argue that the two explanations call for (...) different responses.A tool for identifying those research participants who want limited information is presented. This consists of a restricted number of questions about trust in and appraisal of research, priority of time and privacy, and perception of a duty to participate. It is argued that an important group of participants who purposely lack understanding of the study can be identified with this tool. Some limitations to this approach are also discussed. (shrink)