Abstract:This poetic and performative work explores and expresses an apparent balancing act between sense and nonsense. Ideas of harmony, balance and reciprocity are comfortably attractive but they inevitably offer an illusory, self-satisfied, closed system that leads one back to the starting point. Or worse. Crystalline, this work continues to grow facet within facet through an apparently continual iterative process as it adapts to the requirements of each new context. Any ‘results’ are (re) absorbed into the work-process and assist continued springing (...) forward. (shrink)

We argue that the physics of complex materials and self-organizing processes should be made central to the biology of form. Rather than being encoded in genes, form emerges when cells and certain of their molecules mobilize physical forces, effects, and processes in a multicellular context. What is inherited from one generation to the next are not genetic programs for constructing organisms, but generative mechanisms of morphogenesis and pattern formation and the initial and boundary conditions for reproducing the specific traits of (...) a taxon. There is no inherent antagonism between this “physicalist” perspective and genetics, since physics acts on matter, and gene products are essential material components of living systems whose variability affects the systems’ parameters. We make this notion concrete by summarizing the concept of “dynamical patterning modules” (DPMs; Newman and Bhat, Phys Biol 5:1–14, 2008; Int J Dev Biol 53:693–705, 2009), an explicit physico-genetic framework for the origin and evolution of multicellular form in animals, as well as (when differences in interaction toolkit genes and applicable physical processes are taken into account) in multicellular plants (Hernández-Hernández et al., Int J Dev Biol 56:661–674, 2012). DPMs provide the missing link between development and evolution by revealing how genes acting in concert with physics can generate and transform morphology in a heritable fashion. (shrink)

In his article ‘The case against ethics review in the social sciences’, Schrag asserts that the social sciences should not be subject to ethical review. He recounts a number of examples where ethical review has seemingly failed. He further suggests some alternative models for dealing with ethical review in the social sciences. Finally, he concludes, and we concur, that there is a lack of empirical evidence as to the benefit of research ethics review.

Over the past few years, a growing number of people have called for reconceptualizing participation in health research as a moral obligation. John Harris argues that seriously debilitating diseases give rise to important needs, and since medical research is necessary to relieve those needs in many circumstances, people are morally obligated to act as research subjects.1 Rosamond Rhodes claims that research participation is a moral obligation for reasons of justice, beneficence, and self-development: because we all benefit significantly from modern medicine, (...) we are all required to do our part in advancing the state of medical knowledge.2 Individuals who reap the benefits of medical knowledge without contributing .. (shrink)

In 2008, researchers reported that Timothy Brown , a man with HIV infection and leukemia, received a stem-cell transplant that removed HIV from his body as far as can be detected. In 2013, an infant born with HIV infection received anti-retroviral treatment shortly after birth, but was then lost to the health care system for the next six months. When tested for HIV upon return, the child had no detectable viral load despite cessation of treatment. These remarkable clinical developments have (...) helped reinvigorate the field of ‘HIV cure’ research. (shrink)

Proposed changes to the Common Rule are proffered to save almost 7,000 reviews annually and consequently vast amounts of investigator and IRB-member time. However, the proposed changes have been subject to criticism. While some have lauded the changes as being imperfect, but nevertheless as improvements, others have contended that ‘neither the scientific community nor the public can be confident that improved practices will emerge from the regulatory changes mandated by the NPRM.’ In the present article, I discuss an important aspect (...) that has been overlooked: the question of whether benefits will emerge is demonstrably empirical, yet data upon which to draw conclusions are conspicuous by their absence. This is thrown into sharp relief when we consider the current environment in which health research is increasingly focused on providing evidence of need or benefit, where there is greater emphasis on evidence-based practice, and when we have the nascent field of implementation science. (shrink)

Newborn screening is the programme through which newborn babies are screened for a variety of conditions shortly after birth. Programmes such as this are individually oriented but resemble traditional public health programmes because they are targeted at large groups of the population and they are offered as preventive interventions to a population considered healthy. As such, an ethical tension exists between the goals of promoting the high uptake of supposedly ‘effective’ population-oriented programmes and the goal of promoting genuinely informed decision-making. (...) There is, however, a lack of understanding with regard to how parents experience the tension between promoting uptake and facilitating informed choice. This paper addresses this issue, and data are presented to show how aspects of the timing, presentation of information and procedural routinisation of newborn screening serves to impact on the decisions made by parents. (shrink)

Volume 20, Issue 10, October 2020, Page 44-47.

Web scraping involves using computer programs for automated extraction and organization of data from the Web for the purpose of further data analysis and use. It is frequently used by commercial companies, but also has become a valuable tool in epidemiological research and public health planning. In this paper, we explore ethical issues in a project that “scrapes” public websites of U.S. county jails as part of an effort to develop a comprehensive database to enhance HIV surveillance and improve continuity (...) of care for incarcerated populations. We argue that the well-known framework of Emanuel et al. provides only partial ethical guidance for the activities we describe, which lie at a complex intersection of public health research and public health practice. We suggest some ethical considerations from the ethics of public health practice to help fill gaps in this relatively unexplored area. (shrink)

During vertebrate limb development, various genes of the Hox family, the products of which influence skeletal element identity, are expressed in specific spatiotemporal patterns in the limb bud mesenchyme. At the same time, the cells also exhibit ‘self‐organizing’ behavior – interacting with each other via extracellular matrix and cell‐cell adhesive molecules to form the arrays of mesenchymal condensations that lead to the cartilaginous skeletal primordia. A recent study by Yokouchi et al.(1) establishes a connection between these phenomena. They misexpressed the (...) product of the Hoxa‐13 gene in chick limb buds and demonstrated both skeletal pattern perturbations and changes in cell‐cell adhesivity in mesenchyme aberrantly expressing this protein. (shrink)

Randomized controlled trial trial designs exist on an explanatory-pragmatic spectrum, depending on the degree to which a study aims to address a question of efficacy or effectiveness. As conceptualized by Schwartz and Lellouch in 1967, an explanatory approach to trial design emphasizes hypothesis testing about the mechanisms of action of treatments under ideal conditions, whereas a pragmatic approach emphasizes testing effectiveness of two or more available treatments in real-world conditions. Interest in, and the number of, pragmatic trials has grown substantially (...) in recent years, with increased recognition by funders and stakeholders worldwide of the need for credible evidence to inform clinical decision-making. This increase has been accompanied by the onset of learning healthcare systems, as well as an increasing focus on patient-oriented research. However, pragmatic trials have ethical challenges that have not yet been identified or adequately characterized. The present study aims to explore the views of key stakeholders with respect to ethical issues raised by the design and conduct of pragmatic trials. It is embedded within a large, four-year project that seeks to develop guidance for the ethical design and conduct of pragmatic trials. As a first step, this study will address important gaps in the current empirical literature with respect to identifying a comprehensive range of ethical issues arising from the design and conduct of pragmatic trials. By opening up a broad range of topics for consideration within our parallel ethical analysis, we will extend the current debate, which has largely emphasized issues of consent, to the range of ethical considerations that may flow from specific design choices. Semi-structured interviews with key stakeholders, across multiple jurisdictions, identified based on their known experience and/or expertise with pragmatic trials. We expect that the study outputs will be of interest to a wide range of knowledge users including trialists, ethicists, research ethics committees, journal editors, regulators, healthcare policymakers, research funders and patient groups. All publications will adhere to the Tri-Agency Open Access Policy on Publications. (shrink)

The UK has a long established programme of newborn bloodspot screening. This operates under a model of informed choice. Understanding is central to the `informed’ element of an informed choice yet it is rarely assessed. To date most research within the context of newborn bloodspot screening has focussed on parental recall of information. In this paper I argue that simplistic assessments of knowledge through recall fail to reflect more complex notions of understanding. In support of this contention I draw on (...) qualitative interviews with parents of children who have undergone newborn bloodspot screening. (shrink)

The use of targets to direct public health programmes, particularly in global initiatives, has become widely accepted and commonplace. This paper is an ethical analysis of the utilisation of targets in global public health using our fieldwork on and experiences with voluntary medical male circumcision initiatives in Kenya. Among the many countries involved in VMMC for HIV prevention, Kenya is considered a success story, its programmes having medically circumcised nearly 2 million men since 2007. We describe ethically problematic practices in (...) Kenyan VMMC programmes revealed by our fieldwork, how the problems are related to the pursuit of targets and discuss possible approaches to their management. Although the establishment and pursuit of targets in public health can have many benefits, assessments of target-driven programmes tend to focus on quantifiable outcomes rather than the processes by which the outcomes are obtained. However, in order to speak more robustly about programmatic ‘success’, and to maintain community trust, it is vital to ethically evaluate how a public health initiative is actually implemented in the pursuit of its targets. (shrink)

Scientific developments take place in a socio-political context but scientists often ignore the ways their innovations will be both interpreted by the media and used by policy makers. In the rush to neuroscientific discovery important questions are overlooked, such as the ways: (1) the brain, environment and behavior are related; (2) biological changes are mediated by social organization; (3) institutional bias in the application of technical procedures ignores race, class and gender dimensions of society; (4) knowledge is used to the (...) advantage of the powerful; and (5) its applications may reinforce existing structures of power that pose ethical questions about distributive justice. The case of crime, deception and functional Magnetic Resonance Imaging (fMRI) shows the complexity, and the political and ethical challenges that confront those who seek to use neuroscience to explain the etiology of crime, and who base policy on its findings. An ethically grounded neuroscience needs to take account of existing structures of power and difference, and to develop a public neuropolitical consciousness that ensures that those subject to risk by the application of science and technology are participants in the decision-making processes involving the implementation of policies that affect them. (shrink)

When two populations of cells within a tissue mass differ from one another in magnitude or type of intercellular adhesions, a boundary can form within the tissue, across which cells will fail to mix. This phenomenon may occur regardless of the identity of the molecules that mediate cell adhesion. If, in addition, a choice between the two adhesive states is regulated by a molecule the concentration of which is periodic in space, or in time, then alternating bands of non‐mixing tissue, (...) or segments, can form. But temporal or spatial periodicities in concentration will tend to arise for any molecule that is positively autoregu‐latory. It is therefore proposed that segmentation is a ‘generic’ property of metazoan organisms, and that metamerism would be expected to have emerged numerous times during evolution. A simple model of segmentation, based solely on differential adhesion and periodic regulation of adhesion, can account for segment properties as disparate as those seen in long and short germ band insects, and for diverse experimental results on boundary regeneration in the chick hind brain and the insect cuticle. It is suggested that the complex, multicom‐ponent segment‐forming systems found in contemporary organisms (e.g., Drosophila) are the products of evolutionary recruitment of molecular cues such as homeobox gene products, that increase the reliability and stability of metameric patterns originally templated by generic self‐organizing properties of tissues. (shrink)

Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents, healthcare professionals and policy decision makers in two Canadian provinces. Conceptions of consent-related terms revolved around seven factors within two broad domains, decision-making and information (...) attainment. Decision-making comprised: parent decision authority; voluntariness; parent engagement with decision-making; and the process of enacting choice. Information ascertainment comprised: professional responsibilities ; parent responsibilities; and the need for discussion and understanding prior to a decision. Our findings indicate that consent-related terms are variously understood, with substantive implications for practice. We suggest that consent procedures should be explained descriptively, regardless of approach, so there are clear indications of what is expected of parents and healthcare professionals. Support systems are required both to meet the educational needs of parents and families and to support healthcare professionals in delivering information in a manner in keeping with parent needs. (shrink)

This book is concerned with, and makes an important contribution to, answering the central question of evolutionary theory: By what mechanisms and processes do organisms undergo transformative change? Animals or plants may undergo alterations in morphology or activity during their lifetimes, but only if such alterations are conveyed to the next generation can they contribute to the establishment of new forms. Heritability by itself is not decisive: offspring can differ from their parents at a variety of genetic loci without this (...) constituting evolutionary change, notwithstanding the fact that on theoretical grounds the standard model, stemming from the Modern Synthesis, asserts that any such variation represents incipient evolution (i.e., evolution is change in allele frequency). Clearly, some gene changes make more of an evolutionary difference than others. By placing phenotype at center stage and treating genotypes not in terms of their selective advantage, but rather with respect to the changes they exert on the phenotype, the author subtly but significantly reorients the explanatory terrain of evolutionary theory. (shrink)

In the 1960’s and 1970’s there was a brief flourishing of practical and group phenomenological work, spurred by a renewed intention towards the things themselves. Despite a growing turn to phenomenology across the Humanities since the 1990’s, there is still much more written about phenomenology than phenomenology performed. This essay sketches a brief history of group phenomenological methods which have sought to remedy this situation and outlines a project nearing completion at the Department of Performance Studies at the University of (...) Sydney, Australia, using a small group of trained phenomenological researchers to study the phenomenon of being in audiences. (shrink)

The principle behind anthropomorphic robots is that the appearance and behaviours enable the pre-defined social skills that people use with each other each day to be used as a means of interaction. One of the problems with this approach is that there are many attributes of such a robot which can influence a user’s behaviour, potentially causing undesirable effects. This paper aims to identify and discuss a series of the most salient behaviour influencing factors in the literature, related to a (...) number of robot attributes. A particularly novel aspect of this work is the study of robots as monitoring or data collection devices, one of several behaviour influencing factors which has received insufficient attention. As a first step towards this, the PSA matrix is produced, which visualises the relationships between system attributes and user perceptions, grounded in empirical evidence in the literature. This matrix highlights gaps in the literature, brings together a series of salient behaviour influencing factors for the first time and gives a clear view of the state of the art. (shrink)

Of the nature and origin of the mind, by B. de Spinoza.--Spinoza and the theory of organism, by H. Jonas.--Man a machine, and The natural history of the soul, by J. O. de la Mettrie.--On the first ground of the distinction of regions in space, and What is orientation in thinking? by I. Kant.--Soul and body, by J. Dewey.--The philosophical concept of a human body, by D. C. Long.--Are persons bodies? By B. A. O. Williams.--Lived body, environment, and ego, by (...) M. Scheler.--Metaphysical journal, and A metaphysical diary, by G. Marcel.--The body, by J.-P. Sartre.--The spatiality of the lived body and motility, by M. Merleau-Ponty.--Anthropodology: man a-foot, by R. M. Griffith.--Man and his body, by H. Plügge.--The nobility of sight: a study in the phenomenology of the senses, by H. Jonas.--Born to see, bound to behold: reflections on the function of upright posture in the esthetic attitude, by E. W. Straus.--Selected reading (p. [363]-367). (shrink)

This book brings integrity to the center of philosophical conversations about morality and traces its roots as a philosophical idea to the American pragmatist tradition.

In the Democratic Republic of Congo, only an estimated 2% of all AIDS patients have access to treatment. As AIDS treatment access is scaled‐up in the coming years, difficult rationing decisions will have to be made concerning who will come to gain access to this scarce medical resource. This article focuses on the position, expressed by representatives of Médecins sans Frontières (MSF), that the practice of AIDS treatment access rationing is fundamentally unethical because it conflicts with the ideal of universal (...) treatment access and the human right to health. The conclusion is that MSF's position lacks coherence, has negative practical implications, and is unfair to governments struggling to increase patient's access to AIDS treatment in unfavorable circumstances. (shrink)