Drawing on accounts of the author's personal responses while undertaking a qualitative study on the norms governing the relationship between nurses and mothers, it is argued that such responses, rather than being seen as a source of bias, have the potential to be a source of insight and interpretation in the research. This paper tells the ‘inside’ story of previously published research that was ‘sanitized’ by the omission of any reference to die researcher's subjective responses. The recognition of such researcher (...) responses has implications for how research is supervised and presented. (shrink)

Purpose. With the consideration of anthropological tendencies in modern science, the purpose of the article is to analyze the problem of the subject of cognition, philosophical-psychological rationale for the need to complement it by the concept of "the researcher’s personality". Theoretical basis. The authors rely on post-non-classical methodological tools and basic principles of complexity theory, as well as theoretical provisions of epistemological constructivism, the results of theoretical and empirical psychological studies. In them, authors revealed psychological features of the (...) potential of self-realization of a person prone to innovation and research activities and transfessionalism, including the resources and reserves of the researcher’s personality. Originality. The concept of the subject of cognition is expanded by the concept of "researcher’s personality" and derivative concepts that describe the dynamics of self-harmonization of originative co-generative strengths and opportunities of self-realization of an enlightened person, reveal the degree of correlation in the cognition of the subjective and objective dimensions of his life. It is substantiated that further analysis of the problem of anthropologization of science requires appropriate onto-epistemological grounds that reveals the unity of cognition-education-skill as an essential characteristic of the maturity of the researcher’s personality of scientific knowledge. Conclusions. In the context of anthropological shifts in modern science, the philosophical-psychological analysis of the problem of the subject of cognition is actualized. The psychological research proves the advisability of using the "researcher’s personality" concept as a basic one for understanding the formation of an enlightened human-creator, capable of auto-eco-organization, self-transcendence, and syzygy with the Universe at different levels of innovational research activity. The self-realization of the researcher-personality is a way-search for the authenticity of the multiform unity of life, the personal meaning of scientific truth, and the self-harmonization of the originative co-generative co-determinative strengths in the knowledge of an enlightened person. Including the concept of the subject of cognition in the ontology of the unity of difference-multidimensional poly-essential autopoetic integrity, the anthropologization of science is intended to revive the ancient idea in the unity of truth, education and skill of a scientist, defining the ideal of a modern human-transfessional. (shrink)

Introduction Understanding the views of the public is essential if generally acceptable policies are to be devised that balance research access to general practice patient records with protection of patients' privacy. However, few large studies have been conducted about public attitudes to research access to personal health information. Methods A mixed methods study was performed. Informed by focus groups and literature review, a questionnaire was designed which assessed attitudes to research access to personal health information and factors that influence these. (...) A postal survey was conducted of an electoral roll-based sample of the adult population of Ireland. Results Completed questionnaires were returned by 1575 (40.6%). Among the respondents, 67.5% were unwilling to allow GPs to decide when researchers could access identifiable personal health information. However, 89.5% said they would agree to ongoing consent arrangements, allowing the sharing by GPs of anonymous personal health information with researchers without the need for consent on a study-by-study basis. Increasing age (by each 10-year increment), being retired and primary level education only were significantly associated with an increased likelihood of agreeing that any personal health information could be shared on an ongoing basis: OR 1.39 (95% CI 1.18 to 1.63), 2.00 (95% CI 1.22 to 3.29) and 3.91 (95% CI 1.95 to 7.85), respectively. Conclusions Although survey data can be prone to response biases, this study suggests that prior consent agreements allowing the supply by GPs of anonymous personal health information to researchers may be widely supported, and that populations willing to opt in to such arrangements may be sufficiently representative to facilitate valid and robust consent-dependent observational research. (shrink)

This article studies perceptual differences of three social robots by elementary school children of ages 6–13 years at research fairs. The autonomous humanoid robot Pepper, an advanced social robot primarily designed as a personal assistant with movement and mobility, is compared to the teleoperated AV1 robot—designed to help elementary school children who cannot attend school to have a telepresence through the robot—and the flowerpot robot Tessa, used in the eWare system as an avatar for a home sensor system and dedicated (...) to people with dementia living alone. These three robots were shown at the Norwegian national research fair, held in every major Norwegian city annually, where children were able to interact with the robots. Our analysis is based on quantitative survey data of the school children concerning the robots and qualitative discussions with them. By comparing three different types of social robots, we found that presence can be differently understood and conceptualized with different robots, especially relating to their function and “aliveness.” Additionally, we found a strong difference when relating robots to personal relations to one’s own grandparents versus older adults in general. We found children’s perceptions of robots to be relatively positive, curious and exploratory and that they were quite reflective on their own grandparent having a robot. (shrink)

This Article is a contribution to the torture debate. It argues that the abusive interrogation tactics used by the United States in what was then called the “global war on terrorism” are, unequivocally, torture under U.S. law. To some readers, this might sound like déjà vu all over again. Hasn’t this issue been picked over for nearly fifteen years? It has, but we think the legal analysis we offer has been mostly overlooked. We argue that the basic character of the (...) CIA’s interrogation of so-called “high-value detainees” has been misunderstood: both lawyers and commentators have placed far too much emphasis on the dozen or so “enhanced interrogation techniques” (EITs) short-listed in government “torture memos,” and far too little emphasis on other forms of physical violence, psychological stressors, environmental manipulations, and abusive conditions of confinement that are crucial to the question of whether the detainees were tortured. Furthermore, we dispute one of the standard narratives about the origins of the program: that it was the brainchild of civilian contractor psychologists because— in the CIA’s words—“[n]on-standard interrogation methodologies were not an area of expertise of CIA officers or of the US Government generally.” This narrative ignores the CIA’s role in devising these methods, in spite of the decades of prior CIA research and doctrine about forcing interrogation subjects into a state of extreme psychological debilitation, and about how to do so—by making them physically weak, intensely fearful and anxious, and helplessly dependent. By neglecting this history and focusing on the contractors and the EITs they devised, this narrative contributes to the misunderstanding that the torture debate is about EITs and nothing else. In effect, a “torture debate” about EITs and the torture memos neglects the purloined letter in front of our eyes: the abusive conditions the CIA inflicted on prisoners even when they were not subject to EITs, including abuses that the torture memos never bothered to discuss. Unpacking what this debate is really about turns out to be crucial to understanding that such interrogation methods are torture under existing U.S. law. The U.S. Torture Act includes a clause in its definition of mental torture that was intended to ban exactly the kind of interrogation methods the CIA had researched, out of concern that our Cold War adversaries were using them: mind-altering procedures “calculated to disrupt profoundly the senses or the personality.” That is precisely the “non-standard interrogation methodology” the CIA employed after 9/11. (shrink)

The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (shrink)

Prenatal ultrasound use is skyrocketing despite limited evidence of improved outcomes. One factor driving this trend is the widely recognized psychological appeal of real-time fetal imaging. Meanwhile, considering imperfect safety evidence, U.S. professional guidelines dictate that prenatal ultrasound—a screening test—should be governed by expected clinical benefits—an opportunity for intervention. However, when women’s healthcare professionals themselves are pregnant, their access to ultrasound technology permits informal, personal use that may deviate from standard-of-care, e.g., for reassurance. Highlighting a poignant case wherein a pregnant (...) obstetrician’s personal ultrasound use had unforeseen negative consequences, we explore this issue within context of professional ethics and informal medical care. We discuss how women’s health professionals’ self-care may influence and inform prenatal care at large. We advocate curtailing informal prenatal ultrasound use, but also potentially broadening accepted indications for or relaxing proscriptions against ultrasounds for patients. Further research and updated, evidence-based, ethically-sound guidelines are needed. (shrink)

As part of the regulatory review process, both the Food and Drug Administration and Office for Human Research Protections (U.S. Department of Health and Human Services [HHS]...

Among the letters, memorabilia, manu­scripts, films, and tapes in the eighty-four warehouse boxes of the John Dewey Papers that came to Southern Illinois University at Carbondale in 1972 were a number of boxes that contained the books and journals from Dewey’s personal and professional library. The circumstances surrounding the growth of that library were these: after John Dewey died in 1952, the second Mrs. Dewey, Roberta Grant Dewey, continued to live in the same apartment with the couple’s two adopted children. (...) Upon her death in 1970, the household was dismantled and all the books there were packed away. The library therefore comprises the many volumes col­lected through the years by the two families of John Dewey: the first, John and Alice Chipman Dewey and their children—Lucy, Evelyn, Jane, Fred, Gordon, and Sabino; the second, John and Roberta Dewey and their adopted children—Adrienne and John, Jr. In addition to the books signed or anno­tated by Dewey—well over a hundred have marginalia—or inscribed to him, a number of books with the names of other family members have been included in this checklist because evidence exists that Dewey also used them; others have been included because they were available for possible use. Only school textbooks have been excluded. The checklist is divided into two basic sections: works in English and works in other languages; entries in both sections are anno­tated to indicate Dewey’s notes, marginalia, inscriptions, and similar information. Beyond its use as a research tool, both in editing the Collected Works and in verifying Dewey’s references, this checklist of Dewey’s library provides interesting, often important, insights into his life and work. (shrink)

Incapacitated adults with a legally appointed guardian or conservator may be recruited for or involved with medical, behavioral, or social science research. Much of the research in which such persons participate is aimed at evaluating medical interventions for them, or contributing to general knowledge about disorders from which they may suffer. In this paper we will consider how the appointment of guardians for patients with disorders of consciousness —severe brain injuries that affect a patient’s level of arousal and ability to (...) interact —impacts such patients’ access to research.Such persons may be under guardianship because they have lost decisional capacity (i.e., those in a coma or... (shrink)

Purpose. The paper is aimed at studying the peculiarities of the Oleksandr Kulchytskyi’s doctrine of human, taking into account the context of European philosophy and especially in comparison with the paradigm of philosophizing in the Lviv-Warsaw school. The theoretical basis of the study is determined by Kulchytskyi’s scholarly works in the field of philosophy and philosophical anthropology, as well as the latest researches that reinterpret the influence of Twardowski’s theoretico-methodological ideas on the formation of the philosophical worldview of the Ukrainian (...) thinker. Originality. Based on the appeal to primary sources, Kulchytskyi’s philosophical doctrine of human in the unity of its basic principles and theoretico-practical results is reconstructed. The ways of forming the key ideas of his philosophical anthropology are determined, their originality is substantiated, despite the cooperation with Twardowski’s school, as well as despite numerous discussions and researches of Western European philosophico-anthropological, existentio-ideological and socio-psychological issues. Conclusions. It is found out how the philosophical worldview of Oleksandr Kulchytskyi was formed and how he gradually came from the research of the human psyche within the framework of anthropological structural psychology to the realization of the need to study philosophical anthropology. The personalistic features of his philosophical doctrine of human are characterized; in particular, attention is paid to the distinction between the concepts of person and personality, determining the importance of the social factor for the formation of human worldview, didactic aims of anthropological studies. It is shown how in Kulchytskyi’s philosophical anthropology the analysis of the existentio-worldview dimension of human existence, manifested in different spiritual situations and socio-cultural conditions that influence the specifics of thinking and the nature of the personality mentality, acquires special importance. The originality of Kulchytskyi’s arguments about human in the context of both Ukrainian philosophy and in general European philosophical thought is stated. (shrink)

Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of ‘big data’. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The (...) main purpose of the register was to enable future research into the consequences of ritual circumcision. This article is a study into the case of the Danish Circumcision Registry. We show that such a registry may lead to various forms of harm such as 1) overreaching social pressure, 2) stigmatization, 3) medicalization of a religious practice, 4) discrimination, and 5) polarised research, and that a person may therefore have a strong and legitimate interest in deciding whether or not such data should be collected and/or used in research. This casts doubt on the claim that the requirement of informed consent could and should be waived for all types of secondary research into registries. We finally sketch a new model of informed consent – Meta consent – aimed at striking a balance between the interests in promoting research and at the same time protecting the individual. Research participants may have a strong and legitimate interest in deciding whether or not their data should be collected and used for registry-based research whether or not their data is anonymised. (shrink)

Objective: To inquire into the subjective experience of treatment by persons diagnosed with avoidant personality disorder. Methods: Persons with avoidant personality disorder (N = 15) were interviewed twice, using semi-structured in-depth interviews, analyzed by and the responses subject to interpretative-phenomenological analysis. Persons with firsthand experience of avoidant personality disorder were included in the research process. Results: The superordinate theme emerging from the interviews, “searching for courage to be” encompassed three main themes: “seeking trust, strength, and freedom,” “being (...) managed,” and “discovering the possibility for change and development.” The main theme, “being managed,” included the subthemes: “getting a diagnosis,” “receiving medication,” and “attending therapy.” Conclusion: Although this may not be specific to avoidant personality disorder, Ttheese findings highlight the importance, importance of being met intersubjectively as a person with intentionality and agency, even when one does not feel like one.as an agentive intentional being, even when one does not feel like one, of being met intersubjectively by a therapist. The importance of establishing an emotional bond and emergent trust for open therapeutic communication, collaboration, learning, and becoming able to build courage to begin to approach that which one fears, is emphasized. (shrink)

Design: Qualitative interview study. Participants: Fifty-nine patients with a family history of cancer who attend a regional cancer genetics clinic in the UK were interviewed about their current and previous research experiences. Findings: Interviewees gave a range of explanations for research participation. These were categorised as social—research participation benefits the wider society by progressing science and improving treatment for everyone; familial—research participation may improve healthcare and benefit current or future generations of the participant’s family; and personal—research participation provides therapeutic or (...) non-therapeutic benefits for oneself. Conclusions: We discuss the distinction drawn between motives for research participation focused upon self and others, and observe that personal, social and familial motives can be seen as interdependent. For example, research participation that is undertaken to benefit others, particularly relatives, may also offer a number of personal benefits for self, such as enabling participants to feel that they have discharged their social or familial obligations. We argue for the need to move away from simple, static, individualised notions of research participation to a more complex, dynamic and inherently social account. (shrink)

Research suggests political identity has strong influence over individuals’ attitudes and beliefs, which in turn can affect their behavior. Likewise, firsthand experience with an issue can also affect attitudes and beliefs. A large survey of Americans was analyzed to investigate the effects of both political identity and personal impact on individuals’ reactions to the COVID-19 pandemic. Results show that political identity and personal impact influenced the American public’s attitudes about and response to COVID-19. Consistent with prior research, political identity exerted (...) a strong influence on self-reports of emotional distress, threat perception, discomfort with exposure, support for restrictions, and perception of under/overreaction by individuals and institutions. The difference between Democrats and Republican responses were consistent with their normative value differences and with the contemporary partisan messaging. Personal impact exerted a comparatively weaker influence on reported emotional distress and threat perception. Both factors had a weak influence on appraisal of individual and government responses. The dominating influence of political identity carried over into the bivariate relations among these self-reported attitudes and responses. In particular, the appraisal of government response divided along party lines, tied to opposing views of whether there has been over- or under-reaction to the pandemic. The dominance of political identity has important implications for crisis management and reflects the influence of normative value differences between the parties, partisan messaging on the pandemic, and polarization in American politics. (shrink)

Generally, I find gatherings of the Association for the Scientific Study of Consciousness more interesting and congenial than the Tucson conferences. There are at least two reasons for this, the first one obvious: the former is smaller. Less crowds, more chances to participate in discussions . The second reason reflects my predispositions, and of course those of the ASSC: the talks, research, and speculation are closely data-driven. I find it highly refreshing to attend talks on consciousness which are reporting experiments (...) done by groups employing stringent quality controls, and to hear speculation which is carefully restrained to inferences that closely and clearly follow from consensually verified data. I find it hopeful that researchers have not abandoned lines of inquiry which have decades of experiments to back them up merely because they have not yet found answers to some particular questions. But hey, these are my own biases; I'm someone who thinks the Skeptical Inquirer is a valuable resource. (shrink)

Alzheimer’s disease (AD) in its most common form results in cognitive changes in memory function leading to dementia due to underlying neurodegenerative disease. Recent research advancements in AD...

In The Prenatal Person: Ethics from Conception to Birth Norman Ford has provided an important, thoughtful, accessible account of a natural law view of early human life. Ford has written an engaging book that puts this fundamental moral position about persons and prenatal life in conversation with critics of the position, common morality, the Christian tradition, and many of the complex clinical problems of contemporary medicine. The book is a timely contribution to bioethics and many of the controversies surrounding embryonic (...) stem cell and cloning research. It takes up one of the most important positions in these debates and gives a clear, concise development of the natural law tradition. Ford very clearly lays out a natural law position on early human life and then draws out the implications of that position for many current and important …. (shrink)

A multitude of legislation impacts the use of samples and data for research in South Africa. With the coming into effect of the Protection of Personal Information Act No. 4 of 2013 in July 2021, recent attention has been given to safeguarding research participants’ personal information. The protection of participants’ privacy in research is essential, but it is not the only risk at stake in the use and sharing of personal information. Other rights and interests that must also be considered (...) and safeguarded include the right to non-discrimination, the right to dignity, and the right to enjoy the benefits of scientific progress. This can be achieved by ensuring that the ethical values and universal principles that underpin the research landscape, namely equity, reciprocity, justice and solidarity, are embedded in the regulatory framework for the management and use of personal information. This paper advocates an integrated bioethics approach to the use of personal information for research in SA. A key feature in embedding such an approach is a Data Transfer Agreement that appropriately integrates the safeguards and protections set out by our regulatory framework with bioethical rules and procedures when personal information is used and shared for research purposes. This paper thus calls for the development of a national DTA that is guided by key ethical principles when data are shared for research purposes. This paper will be followed by a webinar on 23 June 2022 hosted by the Department of Science and Innovation and the SA Medical Research Council, where the recommendations and suggestions set out herein will be unpacked, discussed and debated by relevant stakeholders. (shrink)

The attitudes of women patients with cancer were explored when they were invited to participate in one of three randomised trials that included chemotherapy at two university centres and a satellite centre. Fourteen patients participating in and 15 patients declining trials were interviewed. Analysis was based on the constant comparative method. Most patients voiced positive attitudes towards clinical research, believing that trials are necessary for further medical development, and most spontaneously argued that participation is a moral obligation. Most trial decliners, (...) however, described a radical change in focus as they faced the actual personal choice. Almost no one got an impression of clinical equipoise between treatments in the trials, and most patients expressed discomfort with randomisation. A patient’s choice to participate was mainly determined by whether the primary focus was on treatment effect or on adverse effects. Both knowledge about and feelings towards trials originated mostly from the media, although paradoxically the media were largely seen as untrustworthy. Mistrust was shown towards the pharmaceutical industry, and although most patients originally trusted that doctors primarily pursued the interest of patients, they did not trust the adequacy of doctors or industry in maintaining self-regulation. Thus, public control measures were judged to be essential. (shrink)

Three standard psychometric tests were administered to parents who volunteered their children for a randomised, double-blind placebo-controlled trial of a new asthma drug and to a control group of parents whose children were eligible for the trial but had declined the invitation. The trial took place at a children's hospital in Australia. The subjects comprised 68 parents who had volunteered their children and 42 who had not, a participation rate of 94 per cent and 70 per cent, respectively. The responses (...) of these parents to the Gordon Survey of Interpersonal Values Questionnaire, the Coopersmith Self-Esteem Inventory and the Cattell Sixteen Personality Factor Questionnaire were analysed by computer. There was a marked difference between the psychological profiles of the two groups of parents. Volunteering parents put more value on benevolence while non-volunteering parents were more concerned with power and prestige. The self-esteem of volunteering parents was much lower than that of non-volunteering parents. Finally, volunteering parents were more introverted, exhibited greater anxiety and low supergo, while non-volunteering parents appeared to have greater social confidence and emotional stability. Since an individual's values, self-esteem and personality may be important antecedents of behaviour, these findings suggest that parents who volunteer their children for clinical research are not only socially disadvantaged and emotionally vulnerable, but may also be psychologically predisposed to volunteering. Furthermore, these findings provide evidence for the existence of a psychosocial 'filter' effect of the informed consent procedure, which may be discouraging the better educated, more privileged and psychologically resilient members of society from participation as research subjects. (shrink)

Despite the substantial research into the peculiar political and legal status of climate migrants, there is comparatively little exploration of the particular forms of loss such migrants might face or how efforts might mitigate such loss. This paper aims to begin filling that void by characterizing such loss, using the framework of the UNFCC’s Warsaw Mechanism, as agential harm. Using existing models for thinking about the preservation of values and links with the past, I aim to use this idea of (...) a threat to agency to discuss how migration could occur to better preserve the agential control of displaced populations. (shrink)

It is generally accepted that we need more research into concussions and other injuries with potential long-term effects in sport because such research underpins effective, evidence-based prevention, management, support, and treatment. This paper provides an analysis of the obligations of sports federations to support and facilitate such research, as well as an analysis of the role active participants in the sport should have in the research process. The paper focuses on concussion and concussion research, though very similar arguments apply to (...) other common sports injuries with potential long-term effects. The paper argues that sports federations have a moral obligation and a prudential interest in initiating, facilitating, and funding concussion research. This follows from their duty of care towards active participants and from considerations of reciprocity. The ability to discharge these research obligations depends on the resources available to a particular federation, but those who can discharge them should do so. The paper further argues that athletes and other active participants in sport should be involved in all aspects of the concussion research process from conception to design, i.e. that Active Participant Involvement and Engagement (APIE) should be a non-negotiable element of concussion research projects. This is supported by instrumental reasons, but also by philosophical argument based on standpoint epistemology and on ethical arguments related to the interests of active participants. Standpoint epistemology is the epistemological position that the knowledge a person has and can have depends on that person’s standpoint in the world. Keywords: Concussion, funding, participant involvement, sport, sport association, sport federation. (shrink)

Solipsism indicates an epistemological position that denies the existence of ‘others’ by asserting that the ‘self’ is the only thing that can be known to exist. For sophist philosophers, the belief that “we can not know anything, and even if we do so, we cannot communicate it” is central to this theory. However, until now there has been little academic scholarship that has tried to provide answers to the pressing issues raised by solipsism. In Solipsist Ontology: Physical Things and Personal (...) Perceptual Space, Ural aims to redefine solipsism by analyzing and elaborating on traditional philosophical problems, such as empiricism and rationalism, as well as discussing problems of language, communication, and meaning. Ural reveals where solipsism has been previously ignored, pseudo-problems have arisen that disguise the sources of the problems with prejudices that concern the philosophical problems in question. Notably, many current, as well as traditional problems of ontology, epistemology, and language are bound up in discourses of solipsism. Ural argues that discarding solipsism as a philosophical discourse hinders new interpretations of traditional philosophical thought. This book offers a fresh perspective to solipsism by defining it in relation to concepts such as ‘physical things,’ ‘personal perceptual space’ and ‘identity.’ Importantly, Ural proposes that an understanding of ‘identity’ is not necessary in order to redefine solipsism. By building a logical system that fashions communication and solipsism as interrelated, it is possible to reject ‘identity’ as a useless concept and thus overcome the classic solipsist dilemma of “we are not able to communicate.” This original piece of research is an important and timely contribution to the field of philosophy that will be of great interest to teachers, researchers, and students. (shrink)

Background: Financial conflict of interest in clinical research is an area of active debate. While data exist on the perspectives and roles of academic institutions, investigators, industry sponsors, and scientific journals, little is known about the perspectives of potential research participants.Methods: The authors surveyed potential research participants over the internet, using the Harris Interactive Chronic Illness Database. A potential research participant was defined by: self report of diagnosis by a health care professional and willingness to participate in clinical trials. Email (...) invitations were sent to 20 205 persons with coronary artery disease, breast cancer, or depression; a total of 6363 persons were screened; of these, 86% or 5478 met inclusion criteria and completed the survey. The outcome measures were respondents’ ratings on: importance of knowing conflict of interest information, whether its disclosure ought to be required, and its effect on willingness to participate—across seven widely discussed scenarios of financial conflicts of interest .Results: Majority responded that knowing conflict of interest information was “extremely” or “very” important; a larger majority felt financial conflicts of interest should be disclosed as part of informed consent . In all seven scenarios, a majority was still willing to participate but in some scenarios a sizable minority would be wary of participation. Respondents were more wary of individual than institutional conflicts of interest. Illness group and sociodemographic factors had modest effects and did not affect the main trends.Conclusions: The prevailing practice of non-disclosure of financial conflicts of interest in clinical research appears contrary to the values of potential research participants. (shrink)

This article comprises a short case exemplifying ethical challenges arising for a participatory researcher working with Afghan women refugees during the Covid-19 pandemic in Germany. The researcher is an Iranian-German woman, qualified as a midwife, undertaking doctoral research on refugees’ access to reproductive health care. Disclosures about some women’s experience of domestic violence are made, which raise ethical issues for the researcher relating to personal-professional boundaries, roles and responsibilities. Two commentaries are given on this case from participatory researchers based in (...) Germany, UK and Austria. Both commentaries highlight the relevance of the ethics of care for participatory research and for this research in particular, which entails very close relationships between the doctoral researcher and the refugee women with whom she is researching. The first commentary analyses the research process in terms of Tronto’s five phases of care, while the second illustrates the importance of caring institutions in supporting researchers working on sensitive topics. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in (...) the context of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

In this study, we explore the role of Chief Executive Officers’ incentives, split between monetary and non-monetary, in relation to corporate social responsibility. We base our analysis on a sample of 597 US firms over the period 2005–2009. We find that both monetary and non-monetary incentives have an effect on CSR decisions. Specifically, monetary incentives designed to align the CEO’s and shareholders’ interests have a negative effect on CSR and non-monetary incentives have a positive effect on CSR. The study has (...) important implications for the design of executive remuneration plans, as we show that there are many levers that can affect the CEO’s decisions with regard to CSR. Our evidence also confirms the prominent role of the CEO in relation to CSR decisions, while also recognizing the complexity of factors affecting CSR. Finally, we propose a research design that takes into account endogeneity issues arising when examining compensation variables. (shrink)

1. Consider first Baker’s definition of constitution. In her view, constitution is a relation between concrete individuals. Each concrete individual is fundamentally a member of exactly one primary kind. By definition, any concrete individual has its primary kind membership essentially, so that a concrete individual x’s ceasing to be a member of this kind entails that x ceases to exist. For example, David’s primary kind is statue, Piece’s primary kind is piece of marble. Suppose that x and y are concrete (...) individuals; F* designates the property of having F as one’s primary-kind; F and G are not the same kind; individual x has F* and individual y has G*; and D designates G- favorable circumstances—“the milieu required for something to be a G”. Then. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in (...) the context of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in (...) the context of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

While open science gains prominence in South Africa with the encouragement of open data sharing for research purposes, there are stricter laws and regulations around privacy – and specifically the use, management and transfer of personal information – to consider. The Protection of Personal Information Act No. 4 of 2013 (POPIA), which came into effect in 2021, established stringent requirements for the processing of personal information and has changed the regulatory landscape for the transfer of personal information across South African (...) borders. At the same time, draft national policies on open science encourage wide accessibility to data and open data sharing in line with international best practice. As a result, the operation of research ethics committees (RECs) in South Africa is affected by the conflicting demands of the shift towards open science on the one hand, and the stricter laws protecting participants’ personal information and the transfer thereof, on the other. This article explores the continuing evolving role of RECs in the era of open data and recommends the development of a data transfer agreement (DTA) for the ethical management of personal health information, considering the challenges that RECs encounter, which centres predominantly on privacy, data sharing and access concerns following advances in genetic and genomic research and biobanking. (shrink)

Despite the therapeutic potential of human embryonic stem (HES) cells, many people believe that HES cell research should be banned. The reason is that the present method of extracting HES cells involves the destruction of the embryo, which for many is the beginning of a person. This paper examines a number of compromise solutions such as parthenogenesis, the use of defective embryos, genetically creating a "pseudo embryo" that can never form a placenta, and determining embryo death, and argues that none (...) of these proposals are likely to satisfy embryoists, that is, those who regard the embryo as a person. This paper then proposes a method of extracting HES cells, what might be called the Blastocyst Transfer Method, that meets the ethical requirements of embryoists, and it considers some possible concerns regarding this method. It concludes by encouraging future HES cell research to investigate this method. (shrink)

Background:Studies have established that negative perceptions of people living with HIV/AIDS exist among nursing students throughout the world, perceptions which can be detrimental to the delivery of high-quality nursing care.Objectives:The purpose of this research was to explore socio-cultural influences on the perceptions of nursing students towards caring for people living with HIV/AIDS.Research design:The study was guided by stigma theory, a qualitative descriptive research approach was adopted. Data collected via semi-structured interviews were thematically analysed.Participants and research context:Participants were 21 international and (...) Australian undergraduate nursing students enrolled in a Bachelor of Nursing programme at an Australian university.Ethical considerations:Ethical approval was granted by the Social and Behavioural Research Ethics Committee at the study university. Participation was entirely voluntary; informed consent was obtained before the study commenced; confidentiality and anonymity were assured.Findings:Three major themes were found: blame, othering and values. Complex and interrelated factors constructed participant perceptions of people living with HIV/AIDS, perceptions underscored by the prevailing culturally construed blame and othering associated with HIV/AIDS. The study found discordance between the negative personal beliefs and perceptions some nursing students have towards people living with HIV/AIDS, and the professional values expected of them as Registered Nurses.Discussion:There was considerable commonality between this and previous studies on how homosexuality and illicit drug use were perceived and stigmatised, correlating with the blame directed towards people living with HIV/AIDS. These perceptions indicated some nursing students potentially risked not fulfilling the ethical and professional obligations the Registered Nurse.Conclusion:Nursing curriculum should be strengthened in relation to comprehending the meaning of being stigmatised by society. Educational institutions need to work towards enhancing strategies that assist nursing students to reconcile any incongruity between their personal beliefs and requisite professional nursing values. (shrink)

BackgroundLarge-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their (...) participation. This comparison could yield new insights into motives of participation and non-participation, in particular the behavioural change of withdrawal.MethodsWe conducted 36 in-depth interviews with ex-participants, participants, and non-participants of a three-generation, population-based biobank in the Netherlands. The interviews focused on the respondents’ decision-making processes relating to their participation in a large-scale, centralized repository for health research data.ResultsThe decision of participants and non-participants to contribute to the biobank was motivated by a desire to help others. Whereas participants perceived only benefits relating to their participation and were unconcerned about potential risks, non-participants and ex-participants raised concerns about the threat of large-scale, centralized public data repositories and public institutes, such as social exclusion or commercialization. Our analysis of ex-participants’ perceptions suggests that intrapersonal characteristics, such as levels of trust in society, participation conceived as a social norm, and basic societal values account for differences between participants and non-participants.ConclusionsOur findings indicate the fluidity of motives centring on helping others in decisions to participate in large-scale, centralized health research data repositories. Efforts to improve participation should focus on enhancing the trustworthiness of such data repositories and developing layered strategies for communication with participants and with the public. Accordingly, personalized approaches for recruiting participants and transmitting information along with appropriate regulatory frameworks are required, which have important implications for current data management and informed consent procedures. (shrink)

Sampson’s hypothesis that the entry of Western society into a post-modern era of “globalization” will necessitate a change in the conceptualization of the person is discussed in light of relevant group process research and current world events. While it does not seem likely that any fundamental change in the theory of the person will occur, it is plausible that the present form of individualism will adapt to the conditions of this new era. 2012 APA, all rights reserved).

Background: People with a personality disorder suffer from enduring inflexible patterns in cognitions and emotions, leading to significant subjective distress, affecting both self and interpersonal functioning. In clinical practice, Dance Movement Therapy is provided to clients with a PD, and although research continuously confirms the value of DMT for many populations, to date, there is very limited information available on DMT and PD. For this study, a systematic literature review on DMT and PD was conducted to identify the content (...) of the described DMT interventions and the main treatment themes to focus upon in DMT for PD.Methods: A systematic search was conducted across the following databases: EMBASE, MEDLINE, PubMed, WEB OF SCIENCE, PsycINFO/OVID, and SCOPUS following the PRISMA guidelines. The Critical Appraisal Skills Programme for qualitative studies was used to rank the quality of the articles. The Oxford Center for Evidence-based Medicine standards were applied to determine the hierarchical level of best evidence. Quantitative content analysis was used to identify the intervention components: intended therapeutic goals, therapeutic activities leading to these goals, and suggested therapeutic effects following from these activities. A thematic synthesis approach was applied to analyze and formulate overarching themes.Results: Among 421 extracted articles, four expert opinions met the inclusion criteria. Six overarching themes were found for DMT interventions for PD: self-regulation, interpersonal relationships, integration of self, processing experiences, cognition, and expression and symbolization in movement/dance. No systematic descriptions of DMT interventions for PD were identified. A full series of intervention components could be synthesized for the themes of self-regulation, interpersonal relationships, and cognition. The use of body-oriented approaches and cognitive strategies was in favor of dance-informed approaches.Conclusions: Dance movement therapists working with PD clients focus in their interventions on body-related experiences, non-verbal interpersonal relationships, and to a lesser extent, cognitive functioning. A methodological line for all intervention components was synthesized for the themes of self-regulation, interpersonal relationships, and cognition, of importance for developing systematic intervention descriptions. Future research could focus on practitioners' expertise in applying DMT interventions for PD to develop systematic intervention descriptions and explore the suitability of the identified themes for clinical application. Clients' experiences could offer essential insights on how DMT interventions could address PD pathology and specific PD categories. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Religion and the Body in Medical ResearchCourtney S. Campbell (bio)AbstractReligious discussion of human organs and tissues has concentrated largely on donation for therapeutic purposes. The retrieval and use of human tissue samples in diagnostic, research, and education contexts have, by contrast, received very little direct theological attention. Initially undertaken at the behest of the National Bioethics Advisory Commission, this essay seeks to explore the theological and religious questions embedded (...) in nontherapeutic use of human tissue. It finds that the “donation paradigm” typically invoked in religious discourse to justify uses of the body for therapeutic reasons is inadequate in the context of nontherapeutic research, while the “resource paradigm” implicit in scientific discourse presumes a reductionist account of the body that runs contrary to important religious values about embodiment. The essay proposes a “contribution paradigm” that provides a religious perspective within which research on human tissue can be both justified and limited.The retrieval and use of human tissue samples for diagnostic, therapeutic, research, and educational purposes represent further developments in scientific study of the human body as a source of medical information. Following the completion of its examination of the ethical and policy issues pertaining to human cloning in the spring of 1997, the National Bioethics Advisory Commission (NBAC) returned to the set of questions for which it had been originally constituted, including ethical issues that arise in human subjects research. One issue that proved controversial for the human genetics subcommittee of NBAC was the scientific, philosophical, and legal status of tissue and other body parts (usually surgical specimens) that had been retrieved from patients (not research subjects) who had given general consent to the use of their body materials for research and educational purposes. The subcommittee addressed questions about the adequacy of general versus specific [End Page 275] consent, the scientific merits of identifiable versus anonymous samples and claims about patient confidentiality, and the justification for patient refusals and requests that the materials be returned to the patient or discarded rather than made available for scientific research. In an effort to better understand the ramifications of research on human tissue, the subcommittee commissioned several background papers that examined these questions from ethical, legal, research, and religious perspectives. What follows is a modified version of the report on religious considerations originally presented to the genetics subcommittee of NBAC.The central question examined in this article is whether tissue banking for purposes of research presents distinctive theological issues or prompts objections from religious communities or scholars. Religious discussion of human organs and tissues has focused largely on donation for therapeutic purposes (what I describe as the “donation paradigm”); hence, there is very little direct consideration of nontherapeutic uses of such tissue. It is possible, however, to describe implications and suggest inferences by considering (1) religious attitudes to the human body and to organs, tissues, and cells removed from the body, and (2) religious discussions of modes of transfer of body parts, such as donations, offerings, sales, and abandonment. By and large, this discussion will reflect themes that emerge from the central Western religious traditions, with some attention given to Eastern and Native perspectives.The Body: Religious Holism, Scientific Reductionism, Private PropertyThe human body as an organic totality has long been the subject of theological reflection and a symbol for religious communities. However, much less attention has been devoted to the religious status of organs, tissues, cells, and DNA. The reflection of religious scholars and communities on the status of body parts has been prompted by the necessity to confront practical questions in personal and public health and in communal life, such as justifications for surgery, autopsies, organ donation, or burial. Scientific and research interest in parts of the body can sometimes conflict with religious values about bodily integrity. Indeed, E. Richard Gold cites the “disparate claims of scientific investigation and religious belief on the body” as the exemplary case of incommensurate values regarding the body. According to Gold (1996, p. 149), “The body, from a scientific viewpoint, is a source of knowledge of physical development, aging, and disease. From a religious perspective, the body is understood [End Page 276] as a sacred object, being created in the image... (shrink)

Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific result determine whether (...) it should be offered routinely. Different results may therefore require different decisions even within the same study. We argue that the threshold of clinical utility for disclosing a result in a research study should be lower than the threshold used for clinical use of the same result. The personal meaning of a result provides additional criteria for evaluation. Finally, the context of the study allows for a more nuanced analysis by addressing the investigators' capabilities for appropriate disclosure, participants' alternative access to the result, and their relationship with the investigators. This analysis shows that the same result may require different decisions in different contexts. (shrink)

Summary Leading scholars offer perspectives from the philosophy of science on the crisis in psychiatric research that exploded after the publication of DSM-5. -/- Psychiatry and mental health research is in crisis, with tensions between psychiatry's clinical and research aims and controversies over diagnosis, treatment, and scientific constructs for studying mental disorders. At the center of these controversies is the Diagnostic and Statistical Manual of Mental Disorders (DSM), which—especially after the publication of DSM-5—many have found seriously flawed as a guide (...) for research. This book addresses the crisis and the associated “extraordinary science” (Thomas Kuhn's term for scientific research during a state of crisis) from the perspective of philosophy of science. The goal is to help reconcile the competing claims of science and phenomenology within psychiatry and to offer new insights for the philosophy of science. -/- The contributors discuss the epistemological origins of the current crisis, the nature of evidence in psychiatric research, and the National Institute for Mental Health's Research Domain Criteria project. They consider particular research practices in psychiatry—computational, personalized, mechanistic, and user-led—and the specific categories of schizophrenia, depressive disorder, and bipolar disorder. Finally, they examine the DSM's dubious practice of pathologizing normality. (shrink)

BackgroundBiobanking biospecimens and consent are common practice in paediatric research. We need to explore children and young people’s (CYP) knowledge and perspectives around the use of and consent to biobanking. This will ensure meaningful informed consent can be obtained and improve current consent procedures.MethodsWe designed a survey, in co-production with CYP, collecting demographic data, views on biobanking, and consent using three scenarios: 1) prospective consent, 2) deferred consent, and 3) reconsent and assent at age of capacity. The survey was disseminated (...) via the Young Person’s Advisory Group North England (YPAGne) and participating CYP’s secondary schools. Data were analysed using a qualitative thematic approach by three independent reviewers (including CYP) to identify common themes. Data triangulation occurred independently by a fourth reviewer.ResultsOne hundred two CYP completed the survey. Most were between 16–18 years (63.7%, N = 65) and female (66.7%, N = 68). 72.3% had no prior knowledge of biobanking (N = 73).Acceptability of prospective consent for biobanking was high (91.2%, N = 93) with common themes: ‘altruism’, ‘potential benefits outweigh individual risk’, 'frugality', and ‘(in)convenience’.Deferred consent was also deemed acceptable in the large majority (84.3%, N = 86), with common themes: ‘altruism’, ‘body integrity’ and ‘sample frugality’. 76.5% preferred to reconsent when cognitively mature enough to give assent (N = 78), even if parental consent was previously in place. 79.2% wanted to be informed if their biobanked biospecimen is reused (N = 80).ConclusionProspective and deferred consent acceptability for biobanking is high among CYP in the UK. Altruism, frugality, body integrity, and privacy are the most important themes. Clear communication and justification are paramount to obtain consent. Any CYP with capacity should be part of the consenting procedure, if possible. (shrink)