Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

The norm of assertion, to be in force, is a social norm. What is the content of our social norm of assertion? Various linguistic arguments purport to show that to assert is to represent oneself as knowing. But to represent oneself as knowing does not entail that assertion is governed by a knowledge norm. At best these linguistic arguments provide indirect support for a knowledge norm. Furthermore, there are alternative, non-normative explanations for the linguistic data (as in recent work from (...) Van Elswyk). Direct arguments would rely on normative judgments about the permissibility or impermissibility of assertions with and without the speaker knowing the content asserted. John Turri's work experimental results purport to show that our norm of assertion is factive, and probably knowledge. But as a number of recent experimentalists (Kneer, Reuter and Broessel, Marsili and Wiegmann) have shown, Turri's results rely on the problemmatic use of 'should' as in 'Maria should assert that she owns a 1990 watch.' Correcting for this, these experimentalists provide strong evidence that our norm of assertion is not factive. The standard reply to evidence like this from the assertion of unlucky falsehoods is the excuse maneuver. But Marsili and Wiegmann, following Turri's protocol for testing for excuse validation, show that participants who judge that assertions unlucky falsehoods are permissible are not guilty of excuse validation. Given our current understanding of the experimental evidence, knowledge is not our norm of assertion. (shrink)

Prof. Alberto Urquidez, in an important recent article that appears in different form in his book, Redefining Racism, offers an informed, sustained, careful, multi-pronged, and sometimes original critique of the volitional analysis of racism, which I have proposed in a series of articles over the past two dozen years. Here I expand and improve VAR’s analysis of paternalistic racists and their beliefs, clarify its ‘infection’-model’s explanation of racism’s spread and variety, and lay out what it is for something to be (...) ‘characteristically’ racist, an understanding that I then use to offer a unified account of the way in which both certain physical objects and certain abstract objects can properly be called racist. Identifying and engaging some presuppositions behind Urquidez’s social, political, and moral criticisms of VAR, I respond to complaints from him and others, showing that VAR’s content is neither politically conservative nor dependent on religious doctrine, and point out that race theory would in fact profit from taking more seriously and internalizing the Christian morality of most African-Americans. (shrink)

Drawing chiefly on recent sources, in Part One I sketch an untraditional way of articulating what I claim to be central elements of traditional Catholic morality, treating it as based in virtues, focused on the recipients (“patients”) of our attention and concern, and centered in certain person-to-person role-relationships. I show the limited and derivative places of “natural law,” and therefore of sin, within that framework. I also sketch out some possible implications for medical ethics of this approach to moral theory, (...) and briefly contrast these with the influential alternative offered by the “principlism” of Beauchamp and Childress. In Part Two, I turn to a Catholic understanding of the nature and meaning of human suffering, drawing especially on writings and addresses of the late Pope John Paul II. He reminds us that physical and mental suffering can provide an opportunity to share in Christ's salvific sacrifice, better to see the nature of our earthly vocation, and to reflect on the dependence that inheres in human existence. At various places, and especially in my conclusion, I suggest a few ways in which this can inform bioethical reflection on morally appropriate responses to those afflicted by physical or mental pain, disability, mental impairment, disease, illness, and poor health prospects. My general point is that mercy must be informed by appreciation of the person's dignity and status. Throughout, my approach is philosophical rather than theological. (shrink)

A cross-sectional study to ascertain what the Singapore population would regard as material risk in the anaesthesia consent-taking process and identify demographic factors that predict patient preferences in medical decision-making to tailor a more patient-centered informed consent. A survey was performed involving patients 21 years old and above who attended the pre-operative evaluation clinic over a 1-month period in Singapore General Hospital. Questionnaires were administered to assess patients’ perception of material risks, by trained interviewers. Patients’ demographics were obtained. Mann–Whitney U (...) test and Kruskal-Wallis one-way analysis of variance was used. Statistical significance was taken at p < 0.05. Four hundred fourteen patients were eligible of which 26 refused to participate and 24 were excluded due to language barrier. 364 patients were recruited. A higher level of education, being employed and younger age group are factors identified in patients who wanted greater participation in medical decisions. Gender, marital status, type of surgery, and previous surgical history did not affect their level of participation. The complications most patients knew about were Nausea, Drowsiness and Surgical Wound Pain. Patients ranked Heart Attack, Death and Stroke as the most significant risks that they wanted to be informed about in greater detail. Most patients wanted to make a joint decision with the anaesthetist, instead of letting the doctor decide or deciding for themselves. Discussion with the anaesthetist is the preferred medium of communication compared to reading a pamphlet or watching a video. Age and educational level can influence medical decision-making. Despite the digital age, most patients still prefer a clinic consult instead of audio-visual multimedia for pre-operative anaesthetic counselling. The local population appears to place greater importance on rare but serious complications compared to common complications. This illustrates the need to contextualize information provided during informed consent to strengthen the doctor-patient relationship. (shrink)

Pediatric biobanking is considered important for generating biomedical knowledge and improving health care. However, the inclusion of children’s samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that children should be involved through a personalized assent procedure, which means that both the content and the process of assent are adjusted to the individual child. In this paper we provide guidance on how to put personalized assent (...) into pediatric biobanking practice and consider both the content and process of personalized assent. In the discussion we argue that the assent procedure itself is formative. Investing in the procedure should be a requirement for pediatric biobank research. Although personalized assent will require certain efforts, the pediatric community must be aware of its importance. The investment and trust earned can result in ongoing engagement, important longitudinal information, and stability in/for the research infrastructure, as well as increased knowledge among its participants about research activity. Implementing personalized assent will both respect the child and support biobank research. (shrink)

In the first part of the paper, factual information is given about developments in European business ethics since it started on a more or less institutionalized basis, five or six years ago. In the second part some comments are presented on the meaning of the developments and the possible causes. Attention is given to resemblances and differences between American and European business ethics. In the short last part some suggestions are proposed about tasks business ethics will face in the next (...) decade. (shrink)

Patient competence, defined as the ability to reason, appreciate, understand, and express a choice is rarely discussed in patients with obsessive compulsive disorder, and coercive measures are seldom used. Nevertheless, a psychiatrist of psychologist may doubt whether OCD patients who refuse treatment understand their disease and the consequences of not being treated, which could result in tension between respecting the patient’s autonomy and beneficence. The purpose of this article is to develop a notion of competence that is grounded in clinical (...) practice and corresponds with the experiences of patients with obsessions and/or compulsions. We present a naturalistic case study giving both the patient’s and the therapist’s perspective based on in-depth interviews and a narrative analysis. The case study shows that competence is not merely an assessment by a therapist, but also a co-constructed reality shaped by the experiences and stories of patient and therapist. The patient, a medical student, initially told her story in a restitution narrative, focusing on cognitive rationality. Reconstructing the history of her disease, her story changed into a quest narrative where there was room for emotions, values and moral learning. This fitted well with the therapist’s approach, who used motivational interventions with a view to appealing to the patient’s responsibility to deal with her condition. We conclude that in practice both the patient and therapist used a quest narrative, approaching competence as the potential for practical reasoning to incorporate values and emotions. (shrink)

In 1976 Raymond Williams commented, ‘Culture is one of the two or three most complicated words in the English language.’ Such implied difficulty has not prevented Bloomsbury Academic, since the 2000s, from publishing around forty series of their well-produced and generously illustrated Cultural Histories, with, according to their website, a further fifty in progress. Each series contains six volumes, each book covering, in theory, the same chronological period (antiquity, the Middle Ages, the Renaissance, the Enlightenment, the age of empire and (...) the modern age), though there is some variation depending on precise topic. The idea is that one can use these books not only to read ‘horizontally’ about a subject across time, but also ‘vertically’ through different subjects in the same period – a idea made easier by the e-texts of the series on Bloomsbury's website. (shrink)

In this paper the authors argue that research ethics committees should not be paternalistic by rejecting research that poses risk to people competent to decide for themselves. However it is important they help to ensure valid consent is sought from potential recruits and protect vulnerable people who cannot look after their own best interests. The authors first describe the tragic deaths of Jesse Gelsinger and Ellen Roche. They then discuss the following claims to support their case: competent individuals are epistemologically (...) and ethically in the best position to say which risks are reasonable for them, so RECs should be no more restrictive than the “normal” constraints on people taking risks with themselves; RECs do not judge individual competence ; individual liberty is mostly limited by what serves the public interest, and RECs do not determine public interest; RECs may have a paternalistic role in preventing exploitation of competent people vulnerable to the use of incentives, and in protecting the interests of incompetent people; however, the moral and political authority of RECs has not been established in this respect. (shrink)

In this paper we study the variety of order Hilbert algebras, which is the equivalent algebraic semantics of the order implicational calculus of Bull.

Tommie Shelby has offered an influential, carefully stated, and well-argued set of objections to any volitional analysis of racism (VAR) as consisting centrally in certain forms of race-based disregard. Here I hope to defend aspects of VAR by analyzing, evaluating, and sometimes countering several of his major contentions, which have stood unchallenged in the literature over more than two decades. First, I sketch and respond to his Methodological objection to VAR, which criticizes VAR's reliance on language and linguistic intuitions; then (...) to a Psychological objection, which suggests that VAR implausibly distances an agent's intentions from her beliefs; and, finally, to a Psychopathological objection, which holds that VAR requires treating as unproblematic some psychological states better seen as aberrant. The following section treats three subtle counterexamples Shelby uses to challenge VAR's core contentions about what's necessary and what's sufficient for racism. I close with some gestures toward what I see as a promising approach, very different from his, to studying these topics. (shrink)

This paper raises serious problems for the commonly held claim that races are socially constructed. The first section sketches out an approach to our construction of institutional phenomena that, taking Searle’s general approach, restricts social construction proper to cases where we adopt rules that bind relevant parties to treat things of a type in certain ways, thus constituting important roles in, and parts of, our social lives. I argue this conception, construction-by-rules, helps distinguish genuine construction from other activities and relations (...) and also solves a problem raised against simplistic conceptions. The second shows why and how Sally Haslanger, Linda Alcoff, and Glenn Loury have explained race as a social construct. The next points out problems for their and other accounts, including circularity, difficulties arising from conceptual and linguistic history, and non sequiturs. After returning to Haslanger in more detail, I proceed critically to engage work by Ian Hacking, Lawrence Blum, Luc Faucher and Edouard Machery, and Charles Mills. The following sections move from specific accounts in the literature to offer general arguments that viewing races as products of social construction threatens to mislead in numerous ways. At the end, I discuss the significance of the issue and challenge whether social constructionist accounts are genuinely liberating. (shrink)

Contrasting loving our neighbors with utilitarians’ demand to maximize good reveals important metatheoretic structures and dynamics that I call virtues- basing, input drive, role centering, and patient focus. First, love (good will) is a virtue; such virtues are foundational to both moral obligations and the impersonally valuable. Second, part of loving is acting lovingly. Whether and how I act lovingly, and how loving it is, is a matter of motivation; this input-driven account contrasts with highlighting actions’ outcome. Third, in regarding (...) someone as our neighbor we view her in relation to ourselves; a role-centered perspective shows that a wide range of person-to-person role-relationships constitute moral life. Fourth, if our moral task is loving each person, the moral question is how we respond to each person’s relevant welfare and needs, focusing on those toward someone acts (moral patients), not on maximizing good across persons or producing an optimal world. (shrink)

Paul Engelmann was Adolf Loos’s favorite pupil, private secretary to Karl Kraus and Ludwig Wittgenstein’s most important interlocutor in the years between 1916 and 1928 as well as his partner in building the Stonborough House. Thus it was that the trenchant critique of modernity associated with Wittgenstein’s Vienna originated around Paul Engelmann. The present volume of essays from an international symposium in Aarhus, Denmark in 1999 offers an interdisciplinary perspective on issues bearing upon architecture, language and cultural criticism as they (...) relate to the life’s work of Paul Engelmann. (shrink)

In this paper, we explicitly point out the reasons why Special Relativity must be considered as the source of electron deep orbits, and dominates their behavior. We show that the cause is the quadratic form of the relativistic expression of energy, and this clearly appears when we explicitly develop the relativistic Schrödinger equation and compare it with the non-relativistic one.

At the start of her vigorously argued and classic article, “Modern Moral Philosophy,” G. E. M. Anscombe stated three focal theses. First, that philosophers of the time needed to dispense with investigation into talk of what is morally right, wrong; permissible, forbidden, required; and of moral obligation or duty, what we morally ought to do. Second, there was no adequate philosophical psychology then available of the sort needed for doing good moral philosophy. Third, the differences among the modernist moral philosophers (...) that had been most widely discussed were not as important as what they agreed on. I wish here to make some remarks about the sequel. More specifically, I will briefly discuss some aspects of how things have since played out with the first two theses, in order to say something about the relation between the first and second theses and about the state of things with respect to her third thesis, especially as it impacts today's medical ethics, a field of inquiry that barely existed at the time Anscombe wrote “Modern Moral Philosophy.&rdquo. (shrink)

Chris Tucker's paper on the hiddenness argument seeks to turn aside a way of defending the latter which he calls the value argument. But the value argument can withstand Tucker's criticisms. In any case, an alternative argument capable of doing the same job is suggested by his own emphasis on free will.

Alternatives to convenience sampling (CS) are needed for HIV/STI surveillance of most-at-risk populations in Latin America. We compared CS, time space sampling (TSS), and respondent driven sampling (RDS) for recruitment of men who have sex with men (MSM) and transgender women (TW) in Lima, Peru. During concurrent 60-day periods from June-August, 2011, we recruited MSM/TW for epidemiologic surveillance using CS, TSS, and RDS. A total of 748 participants were recruited through CS, 233 through TSS, and 127 through RDS. The TSS (...) sample included the largest proportion of TW (30.7 %) and the lowest percentage of subjects who had previously participated in HIV/STI research (14.9 %). The prevalence of newly diagnosed HIV infection, according to participants' self-reported previous HIV diagnosis, was highest among TSS recruits (17.9 %) compared with RDS (12.6 %) and CS (10.2 %). TSS identified diverse populations of MSM/TW with higher prevalences of HIV/STIs not accessed by other methods. (shrink)

What are the responsibilities of a business towards the city in which it operates? The Professor of Business Ethics at Nijenrode University, the Netherlands Business School suggests three practical ways of identifying them. This article is the substance of a paper which he delivered as Chairman of the European Business Ethics Network at its 1992 Conference in Paris.

Lanczos, C. Einstein's path from special to general relativity.--Balazs, N. L. The acceptability of physical theories: Poincaré versus Einstein.--Ellis, G. F. R. Global and non-global problems in cosmology, by G. F. R. Ellis and D. W. Sciama.--Ehlers, J. The geometry of free fall and light propagation, by J. Ehlers, F. A. E. Pirani and A. Schild.--Trautman, A. Invariance of Lagrangian systems.--Penrose, R. The geometry of impulsive gravitational waves.--Exact solutions of the Einstein-Maxwell equations for an accelerated charge.--Taub, A. H. Plane-symmetric similarity (...) solutions for self-gravitating fluids.--Robinson, I. Equations of motion in the linear approximation, by I. Robinson and J. R. Robinson.--Florides, P. W. Rotating bodies in general relativity.--Chandrasekhar, S. A limiting case of relativistic equilibrium.--Israel, W. The relativistic Boltzmann equation.--Thompson, W. B. The self-consistent test-particle approach to relativistic kinetic theory. (shrink)