This paper argues that professionals who make boundary-related decisions should be guided by relationship-based practice. In our roles as service users and professionals, drawing from our lived experiences of professional relationships, we argue we need to move away from distance-based practice. This includes understanding the boundary stories and narratives that exist for all of us – including the people we support, other professionals, as well as the organisations and systems within which we work. When we are dealing with professional boundary (...) issues, we should centre relationship-building skills that are central to many other aspects of our work. Skills that foster relationships at all levels – between professionals, service users, and services – need to be revalued. Our final recommendation is to create, develop, and foster safer spaces within and outside of organisations, as well as inter-professionally, for the discussion and exploration of boundary-related issues and practice. We are interested in hearing from those with experiences of being marginalised by boundaries so that they can inform a reshaping of our collective ideas around boundary related practices. To foster relationship-based practices in organisations, we have outlined several recommendations here; however, we recognize that these do not go far enough, and that collective action is needed to inform systemic change. (shrink)

This paper describes the scientific practices of the anatomists from the Société Anatomique de Paris (1803–1873) who were collecting anatomical and pathological specimens in Nineteenth-Century Paris and which led to the building of the anatomy and pathology Musée Dupuytren (1835–2016). The framework introduced by Robert Kohler to describe collecting sciences (2007) is useful as a tool to identify the set of diverse practices within pathological anatomy in nineteenth-century Paris. However, I will argue that anatomy and pathology collecting (...) had specific features compared to most collecting sciences. Two main collecting practices could be distinguished: first, “finding” anatomical specimens and second, keeping these specimens. The first kind of practices were at least rhetorically and explicitly motivated by Auguste Comte’s positive philosophy. But “finding” an anatomy or pathology specimen could not be completely compared to finding an object or making a simple observation, as dissecting as well as some experimental practices were also involved. Heterogeneous practices thus coexisted within collecting in anatomy and pathology. Epistemological as well as pragmatic tensions arose. On top of Kohler’s framework, I introduce Sabina Leonelli’s concept of “data journey” to offer a narrative of the diversity of collecting practices involved in the Société Anatomique de Paris and the Musée Dupuytren. I use the concept to analyse how this diversity of practices impacted knowledge production. (shrink)

In this contribution, we will discuss the opportunities and challenges arising from memory institutions' need to redefine their archival strategies for contemporary collecting in a world of big data. We will reflect on this topic by critically examining the case study of the UK Web Archive, which is made up of the six UK Legal Deposit Libraries: the British Library, National Library of Scotland, National Library of Wales, Bodleian Libraries Oxford, Cambridge University Library and Trinity College Dublin. The UK (...) Web Archive aims to archive, preserve and give access to the UK web space. This is achieved through an annual domain crawl, first undertaken in 2013, in addition to more frequent crawls of key websites and specially curated collections which date back as far as 2005. These collections reflect important aspects of British culture and events that shape society. This commentary will explore a number of questions including: what heritage is captured and what heritage is instead neglected by the UK Web archive? What heritage is created in the form of new data and what are its properties? What are the ethical issues that memory institutions face when developing these web archiving practices? What transformations are required to overcome such challenges and what institutional futures can we envisage? (shrink)

In recent decades, historians have become increasingly interested in the logistical challenges and difficulties encountered by those responsible for the collection, preservation and safe transport of specimens from the field to the museum or laboratory. This article builds on this trend by looking beyond apparent successes to consider the practices and practicalities of shipboard travel and maritime and coastal collecting activities. The discussion focuses on the example of William Henry Harvey, who travelled to Australia in pursuit of cryptogams – (...) non-flowering plants like mosses, lichens and algae – in 1853. In his private correspondence to family and friends, Harvey offered insights into the challenges and obstacles faced by all collectors in the period. His experiences were fundamentally shaped by the material culture, embodied knowledge and physical constraints he encountered on the way. On one level, shipboard and onshore collecting activities were facilitated by the connections forged by new technologies and Britain's global empire. But they also depended on specific contexts and relied on local agents and actors, as well as on the physical and technical facilities (and limitations) of those doing the collecting. The examples of Harvey and others shed light on the real, ‘lived’ experiences of individual collectors, the difficulties and challenges they encountered in amassing their collections, and the networks of people on which they relied. (shrink)

The merging of the positions of photographer and collector defines the drive of a certain kind of photographic work, for which the camera becomes a collecting device, accumulating a collection that speaks the subjectivity of its author – the photographer. There are, however, two impulses at work here: the photographer-as-collector and the collector-as-photographer. Both are present in the work of Martin Parr, who has openly admitted that he has ‘the collecting gene’, but also, somewhat earlier, in the work (...) of Walker Evans whose obsession with collectibles and whose mode of photographic collecting provide a striking historical precedent for Parr’s compulsive practice. My article explores the collecting impulse that motivates these photographers and, more particularly, shapes a new mode of making photographs and cataloguing social life that seem to escape established genre categories, including especially the category of documentary. (shrink)

In this paper, we describe the challenges of collecting data in the Māori population for automatic detection of schizophrenia using natural language processing (NLP). Existing psychometric tools for detecting are wide ranging and do not meet the health needs of indigenous persons considered at risk of developing psychosis and/or schizophrenia. Automated methods using NLP have been developed to detect psychosis and schizophrenia but lack cultural nuance in their designs. Research incorporating the cultural aspects relevant to indigenous communities is lacking (...) in the design of existing automatic prediction tools and one of the main reasons is the scarcity of data from indigenous populations. This paper explores the current design of the New Zealand health care system and its potential impacts on access and inequities in the Māori population and details the methodology used to collect speech samples of Māori at risk of developing psychosis and schizophrenia. The paper also describes the major obstacles faced during speech data collection, key findings, and probable solutions. (shrink)

This book locates the paradoxical process of collecting (as an activity that necessarily involves displacement and dispersal) in the ways nineteenth- and twentieth-century German-language literature (and in one case, cinema) attempts to represent ephemeral, discarded, and trivial things.

The context of discovery and collection of Siwalik fossils had far less to do with science than with the ability to effect “translations” that helped bring together a wide range of social worlds, from the Doab Canal engineers working at the foot of the Hills, surgeon-botanists at the Saharanpur Botanic Gardens, other colonial officials, the native “Hindoo” diggers and collectors, to all of whom the Siwalik Hills was a “boundary object,” a common factor that bound their lives together. In this (...) colonial scientific collecting episode pertaining to the discovery of a new field of research, cooperation between different participants is achieved not by using methods of standardization but through an emphasis on greater heterogeneity, both in terms of the “allies” enrolled and fossils collected. Heterogeneity becomes a factor of strength rather than a weakness that deters the practice of science. This essay employs sociological reflection to examine the context of discovery, collection, and justification of a significant group of fossils in India in the 1830s–40s. (shrink)

In the second half of the 19th century, anthropology rode the coat-tails of modernity, adopting new printing technologies, following new travel networks, and gaining increasing access to Indigenous people as colonialism spread and new policies were developed to contain and control people in settler-colonial states. The early innovator in kinship studies Lewis Henry Morgan and his two greatest proteges, Lorimer Fison and A. W. Howitt, working respectively in the United States, Fiji, and Australia, epitomised this conflation of governance, technologies of (...) representation, and anthropology. They corresponded on the alterity of kinship systems across increasingly regularised postal routes, and developed new forms of collecting and new diagrammatic representations of kinship using developments at the press. Nineteenth-century kinship studies were focused exclusively on relationships formed through biology and descent, and there was little recognition of kinship making beyond these forms. This was especially significant for Howitt, whose closest Aboriginal interlocutor, Tulaba, claimed him as a brogan (brother), according to Gunaikurnai kinship paradigms. This article tracks the links between the collection and publication of kinship material in the questionnaires and the books of the latter part of the 19th century across the English-speaking world and the outcomes for Indigenous peoples, as arguments for distinctive kinship systems helped define their ‘primitiveness’ and dismissed Aboriginal attempts to forge kinship links across the settler/Indigenous divide. (shrink)

One of the goals of The Patient Protection and Affordable Care Act is the reduction and elimination of health inequities, generally defined as population-level health differences that adversely affect disadvantaged groups. The ACA provides powerful new tools to collect, analyze, and share standardized data on these inequities. Prior to the ACA, disability was marginalized in data collection efforts, limiting our ability to understand and address significant health inequities experienced by millions of Americans. Now, for the first time, we can use (...) these tools to collect valuable new data on the nature and extent of health inequities experienced by people with disabilities across the country. Standardized health data collection is critical to health equity. (shrink)

Analysis of the local implementation of paternity establishment and child support policy in four Wisconsin counties suggests that these policies reproduce some aspects of patriarchal gender relations. The counties' information-collecting practices focused on nonmarital mothers' sexual activity and nonmarital fathers' employment and income. Women were questioned far more extensively than men about their sexual practices and partners; women's accounts of their sexual activity were used to evaluate their overall truthfulness, and administrative practices in effect encouraged alleged fathers to state (...) whether they were convinced of the mother's sexual fidelity. By demonstrating the gendered nature of the terms under which public assistance is granted, the findings highlight the significance of the process of policy implementation for understanding the gendered character of state systems of social provision. (shrink)

La pandémie de COVID-19 a eu un effet mondial. L’impact disproportionné sur les peuples autochtones et les groupes racialisés a mis les défis éthiques au premier plan dans la recherche et la pratique clinique. Au Canada, l’Énoncé de politique des trois Conseils (EPTC2), et plus particulièrement le principe de justice, met l’accent sur les soins supplémentaires à apporter aux personnes « dont les circonstances les rendent vulnérables », notamment les communautés autochtones et racialisées. En l’absence de données fondées sur la (...) race pour mesurer et éclairer la recherche en santé et la pratique clinique, nous courons le risque de causer plus de tort et de contribuer à des injustices continues. Toutefois, en l’absence d’un cadre accepté pour la collecte, la tenue à jour et la communication des données fondées sur la race au Canada, il est nécessaire d’obtenir davantage de conseils sur la façon de bien faire les choses. Il est important de noter qu’un cadre pour la collecte de données fondées sur la race devrait s’appuyer sur les directives existantes des communautés autochtones et d’autres communautés structurellement marginalisées, sur l’EPTC2, sur les recommandations de l’Organisation mondiale de la santé et sur la participation des intervenants concernés. Dans le présent document, nous décrivons des exemples historiques d’études non éthiques sur les Autochtones et les groupes racialisés, nous discutons des défis et des avantages potentiels de la collecte de données fondées sur la race, et nous concluons par les objectifs d’un cadre pancanadien visant à informer la façon dont les données fondées sur la race sont recueillies, stockées et accessibles dans la recherche en santé. (shrink)

First published in 1998. Routledge is an imprint of Taylor & Francis, an informa company.

This paper argues that any museum's collecting policy must face up to the problem of vulnerability. Taking as a starting point an item in the collections of the United States Holocaust Memorial Museum, I argue that the basic responsibility of museums to collect ‘things’, and to communicate information about them in a truthful way brings their collecting practice into the epistemological domain of testimony and into the normative domain of ethics. Museums are public spaces of memory, testimony, representation (...) and interpretation that at once enable humanity to hold to account those who transgress while at the same time holding to account those who witness these transgressions. By virtue of this, museums can be considered spaces of ethics wherein testimonial and hermeneutic injustice can be confronted and challenged. (shrink)

Two studies examined the use of think aloud (TA) protocol as a means for collecting data of cognitive processes during performance in golf. In study 1, TA was employed to examine if different verbalisation (Level 2 or Level 3 TA) instructions influence performance of high and low skilled golfers. Participants performed 30 putts using TA at either Level 2, Level 3, or no verbalization condition. Although Level 3 verbalization produced a higher volume of verbal data than Level 2, TA (...) at either level 2 or 3 did not impair putting performance compared to no verbalization. Study 2 examined the congruence between data collected via TA at Level 3 and cued retrospective recall of cognitive processes during golf performance. Experienced golfers performed six holes of golf whilst engaging in Level 3 TA. After performance, three semi-structured retrospective interviews were conducted (ten minutes after performance, 24 hours after performance and 48 hours after performance). A comparison of the themes identified large discrepancies between the information reported during TA and at interview, with only 38-41% similarity in variables reported to influence decision making on each hole. Both studies suggest TA is a valuable method for recording cognitive processes of individuals during task performance. TA provides richer verbal data regarding decisions than cued retrospective recall, and TA does not negatively impact performance. (shrink)

Humans have always played a crucial role in the evolutionary dynamics of agricultural biodiversity and thus there is a strong relationship between these resources and human cultures. These agricultural resources have long been treated as a global public good, and constitute the livelihoods of millions of predominantly poor people. At the same time, agricultural biodiversity is under serious threat in many parts of the world despite extensive conservation efforts. Ethical considerations regarding the collecting, research, and use of agricultural biodiversity (...) are currently topics of great concern. For example, easy access to genetic resources for breeding purposes is important, but international agreements and legal frameworks are necessary to ensure adequate recognition of the contributions of local communities and traditional farmers in creating and nurturing these resources. Here, we assess ethical principles in the context of existing codes of conduct that are relevant for agro-biodiversity researchers. We aim to create awareness among scientists and policy makers who are concerned with agro-biodiversity research and its potential impact on local communities. We encourage a serious assessment of the ethical principles presented here and hope to facilitate an integration of these principles into the reader’s personal ethical framework. Key ethical principles considered here include the importance of obtaining prior informed consent, equity, and the inalienability of rights of local communities and farmers. (shrink)

ArgumentCollecting data about people with mental disorders living outside of asylums became a heightened concern from the early nineteenth century onwards. In Germany, so-called “insanity counts” targeted the number and sometimes the type the mentally ill who were living unattended and untreated by professional care throughout the country. An eagerly expressed assumption that the “true” extent of the gathered numbers must be much higher than the surveys could reveal came hand in glove with the emerging task of “managing” insanity and (...) its potential dangers in a modern society. The doorstep of the family home became a crucial site in psychiatrists’ and enumerators’ efforts to register the most sensitive of personal data. This article traces the ever more diligent methods that were employed to obtain the desired information, as well as the hidden agenda of the postulate of missing data itself. It also addresses the profound impact that the presumption of having only incomplete data has had on the practice of counting and surveying, as well as on the understanding of the need for professional monitoring of mental illness. (shrink)

One of the core goals of Digital Health Technologies (DHT) is to transform healthcare services and delivery by shifting primary care from hospitals into the community. However, achieving this goal will rely on the collection, use and storage of large datasets. Some of these datasets will be linked to multiple sources, and may include highly sensitive health information that needs to be transferred across institutional and jurisdictional boundaries. The growth of DHT has outpaced the establishment of clear legal pathways to (...) facilitate the collection, use and transfer of potentially sensitive health data. Our study aimed to address this gap with an ethical code to guide researchers developing DHT with international collaborative partners in Singapore. We generated this code using a modified Policy Delphi process designed to engage stakeholders in the deliberation of health data ethics and governance. This paper reports the outcomes of this process along with the key components of the code and identifies areas for future research. (shrink)