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The potential for bias in industry‐developed information about noninvasive prenatal testing (NIPT), in addition to the lack of regulatory oversight for this type of product, raises questions about clinical communication and adoption. We identify NIPTs marketed globally and analyze their English‐language consumer‐oriented brochures to determine whether they meet existing policy and ethical guidance from the Nuffield Council on Bioethics on NIPT marketing, how they establish the legitimacy of the test given the lack of regulatory oversight for NIPT, and whether content differs between the brochures from for‐profit and nonprofit entities. In many of these brochures, NIPTs are misrepresented as diagnostic tests, claims lack supporting evidence, regulatory bodies that do not evaluate the test itself are referenced, and clinicians are invoked as authorities on specific NIPTs. Our findings substantiate concerns about the extent to which commercial imperatives operating in the absence of market‐access regulation could exacerbate problems of misrepresentation and inaccuracy in marketing materials. [ABSTRACT FROM AUTHOR]

Responsible Research and Innovation (RRI) seeks to steer innovation toward important societal challenges and, by doing so, calls for entrepreneurial activities that create economic, social, and environmental value. Nonetheless, little is known about the way different types of organization can produce responsible products and services and the challenges they face when implementing new business models remain largely uncharted. By linking the RRI and the business model literatures, the aim of this article is to generate a better understanding of the challenges underlying responsible value creation. To do so, we approach the business model as a dynamic construct that crosses organizational boundaries and develop an empirically grounded multilevel model that links entrepreneurs' practices (micro‐level), organizational management (meso‐level), and innovation system dynamics (macro‐level). Our multiple case studies include for‐profit and not‐for‐profit Canadian and Brazilian organizations (n = 16) engaged in the production of responsible health innovations and explore the following research questions: "What business model challenges do these organizations face in their attempt to produce responsible innovations? How do these challenges affect the implementation of their business model and capacity to achieve responsible value creation?" Our findings focus on cross‐case commonalities that clarify how specific business model components are dynamically adapted in response to eight micro‐, meso‐, and macro‐level business model challenges, while the organizations' capacity to adequately align these components remains precarious. Our study provides innovation management scholars with an empirically grounded model that brings conceptual clarity to responsible value creation. This groundwork may foster cumulative knowledge growth on the way RRI‐oriented organizations can orchestrate their activities toward responsible value creation, which simultaneously requires individual entrepreneurial skills, organizational capacities, and the support of other innovation stakeholders. [ABSTRACT FROM AUTHOR]

COVID‐19 has radically changed the higher education sector in Australia and beyond. Restrictions on student movement (especially for international students) and on gatherings (which limited on‐campus sessions) saw universities transition to fully online teaching modes almost overnight. In this commentary, we reflect on this transition and consider the implications for teaching the disciplines of geography and planning. Reflecting on experiences at the Department of Geography and Planning at Macquarie University, we explore a series of challenges, responses and opportunities for teaching core disciplinary skills and knowledge across three COVID‐19 moments: transition, advocacy, and hybridity. Our focus is on the teaching of core disciplinary skills and knowledge and specifically on geographical theory, methods, and fieldwork and professional practice skills. In drawing on this case from Macquarie University, we offer insights for the future of teaching geography and planning in universities more broadly. [ABSTRACT FROM AUTHOR]

The paper conceptualises the process of voluntary relocation undertaken by rural farmers to informal settlements in coastal cities. These are journeys that occur without formal institutional support, utilising migrants' own agency. Learning from these community‐driven relocations has merit in rethinking climate change adaptation at the regional level. In this paper we present stories of 17 families who have progressively relocated to the fringes of Khulna city in southwestern Bangladesh. We observe three key attributes: first, relocations are slow, neither singular nor immediately completed, but rather take months of careful back and forth journeys of family members between their places of origin and destination. Second, relocations rely on small networks of relatives and acquaintances at the destination. Third, relocations are built on shared responsibilities distributed among a range of actors in places of origin and destination. We conclude that these slow, small and shared relocations are likely to be realised as forms of ongoing adaptation by rural farmers if their aspirational mobilities, social relations and supports are maintained at a regional scale. This kind of migration as adaptation may bring about just outcomes for those displaced without necessarily promoting rigid planning interventions that tend to fix resettlement solutions in place and time. [ABSTRACT FROM AUTHOR]

Climate change will likely increase the scale of this displacement, leading to new and intensified patterns of migration as well as planned resettlement (also known as retreat or relocation) of people from high-risk areas (de Sherbinin et al., [11]). Recognising resettlement as evidence of loss and damage is likely to elevate attention on the seriousness of the impacts of resettlement and resist the normalisation of resettlement as anything other than the option of last resort. Price argues that, '[a]ny laws governing climate change relocations must protect rights, livelihoods, well-being, inclusive decision-making and community initiatives with procedures whilst not relinquishing climate-change-reducing action'. 30 Wilmsen, B. and M. Webber (2015) What can we learn from the practice of development-forced displacement and resettlement for organised resettlements in response to climate change?. [Extracted from the article]

Increasingly the environment, and climate risks in particular, are influencing migration and planned resettlement in Vietnam, raising the spectre of increased displacement in a country already confronting serious challenges around sustainable land and water use as well as urbanisation. Planned resettlement has emerged as part of a suite of measures being pursued as part of disaster risk reduction and climate change adaptation strategies. This paper provides an historical, political, legal and environmental overview of resettlement in Vietnam identifying key challenges for framing resettlement as climate change adaptation. The paper outlines the scale of past resettlement in Vietnam, identifying the drivers and implications for vulnerability. Detailed case studies of resettlement are reviewed. Through this review, the paper reflects on the growing threat of climate change and the likelihood of increased displacement associated with worsening climate risks to identify some critical considerations for planned resettlement in climate change adaptation planning. [ABSTRACT FROM AUTHOR]

Preimplantation genetic diagnosis (PGD) allows couples to test for a genetically affected embryo prior to implantation. Patient access to this ethically complex and expensive technology differs markedly across jurisdictions, with differences in private/public insurance coverage and variations in patient inclusion and diagnostic criteria. The objective of the study was to identify trade‐offs regarding PGD coverage decisions amongst genetic counselors. To quantify stated preferences for PGD coverage, we conducted a discrete choice experiment with Canadian genetic counselors (GC) considering attributes regarding the scope of testing (PGD indication, risk of the condition and number of cycles covered) and patient inclusion criteria (fertility status and family history). Multinomial logit regression was used to estimate trade‐offs amongst attributes using part‐worth utilities and importance scores. The completed response rate was 41% with 126 GC completing the survey. Risk of the genetic condition was the most important attribute. Overall, GC were more responsive to the scope of testing criteria including the condition's risk (importance score of 42%) and PGD indication (31%) rather than family history (11%) and fertility status (8%). Based on this study's attributes and levels, condition characteristics are prioritized even above patient characteristics for PGD coverage. [ABSTRACT FROM AUTHOR]

Connections between people and water have received considerable attention within geographic research. This paper draws on cultural and historical geographies, political ecology and the environmental humanities to extend understandings of the hydrosocial cycle by focusing on the cultural dimensions of society–water relations through the concept of shadow waters. Shadow waters centres attention on the cultures that privilege certain waters while rendering other waters invisible and marginalised. Inspired by Val Plumwood's notion of "shadow places," shadow waters brings to light the way power intersects with cultural practices. We bring this concept of shadow waters into conversation with Indigenous water knowledges. Shadow waters can be conceptualised vertically, with surface water receiving more policy and research attention than ground water, and also horizontally, as some sub‐catchments, uses and values have been ignored or undervalued in macro‐catchment processes. Temporally, in considering the past, complex and contested histories of human–environment relations are often overlooked in favour of simple historical narratives that ultimately reinforce dominant management structures and trajectories. Shadow waters are thus historically created as particular power structures and narratives are reinforced and "normalised" over time. This paper examines shadow waters in southeastern Australia, elucidating the way two rivers are interwoven and co‐determined in cultures of water use in this context. We show how the rethinking of dominant water cultures, made possible by cross‐cultural engagement, generates new possibilities for reconnection, restoration and protection; a different water ethics based on care and responsibility that addresses power relations and injustices. [ABSTRACT FROM AUTHOR]

A diversity of place‐based community economic practices that enact ethical interdependence has long enabled livelihoods in Monsoon Asia. Managed either democratically or coercively, these culturally inflected practices have survived the rise of a cash economy, albeit in modified form, sometimes being co‐opted to state projects. In the modern development imaginary, these practices have been positioned as ‘traditional’, ‘rural’ and largely superseded. But if we read against the grain of modernisation, a largely hidden geography of community economic practices emerges. This paper introduces the project of documenting keywords of place‐based community economies in Monsoon Asia. It extends Raymond William’s cultural analysis of keywords into a non‐western context and situates this discursive approach within a material semiotic framing. The paper has been collaboratively written with co‐researchers across Southeast Asia and represents an experimental mode of scholarship that aims to advance a post‐development agenda. [ABSTRACT FROM AUTHOR]

Drawing on institutional theory, this article articulates qualitative insights from a program of research on Canadian health technology-based ventures to examine the rules that characterize economic policy, capital investment, and regulatory approval as well as the way these institutions enable and constrain the development of ventures at an early stage. Our findings clarify how economic policy integrates these ventures into the entrepreneurial domain, how capital investment configures them for economic value extraction, and how regulatory approval fully releases their market value. These findings help to revisit current policy modernization initiatives by calling attention to the convergence among the three institutions. Rather than operating solely as a source of constraints, these institutions provide a highly integrated market-oriented space for health technology-based entrepreneurial activities to unfold. [ABSTRACT FROM AUTHOR]

Background: Patient-centered health care for children with inborn errors of metabolism (IEM) and their families is important and requires an understanding of patient experiences, needs, and priorities. IEM-specific patient groups have emerged as important voices within these rare disease communities and are uniquely positioned to contribute to this understanding. We conducted qualitative interviews with IEM patient group representatives to increase understanding of patient and family experiences, needs, and priorities and inform patient-centered research and care. Methods: We developed a sampling frame of patient groups representing IEM disease communities from Canada, the United States, and United Kingdom. With consent, we interviewed participants to explore their views on experiences, needs, and outcomes that are most important to children with IEM and their families. We analyzed the data using a qualitative descriptive approach to identify key themes and sub-themes. Results: We interviewed 18 organizational representatives between February 28 and September 17, 2014, representing 16 IEMs and/or disease categories. Twelve participants voluntarily self-identified as parents and/or were themselves patients. Three key themes emerged from the coded data: managing the uncertainty associated with raising and caring for a child with a rare disease; challenges associated with the affected child's life transitions, and; the collective struggle for improved outcomes and interventions that rare disease communities navigate. Conclusion: Health care providers can support children with IEM and their families by acknowledging and reducing uncertainty, supporting families through children's life transitions, and contributing to rare disease communities' progress toward improved interventions, experiences, and outcomes. [ABSTRACT FROM AUTHOR]

The article presents the study on the expectations of citizens on the academic entrepreneurship (AE), an academic nature of commercial science, and the analysis of the conflict of interest (COI), practical benefits, and general beliefs. A cross-sectional survey was designed to assess the approval of AE varying on the type of concerns. Results were outlined and conclude the support of citizens on AE considering their expectation on the benefits of academic-industry collaboration.

Objectives Newborn bloodspot screening ( NBS) panels have expanded to include conditions for which treatment effects are less certain, creating debate about population-based screening criteria. We investigated Canadian public expectations and values regarding the types of conditions that should be included in NBS and whether parents should provide consent. Methods Eight focus groups ( FG; n = 60) included education, deliberative discussion and pre-/post-questionnaires. Data were analysed quantitatively and qualitatively. Results Quantitatively, the majority supported NBS for serious disorders for which treatment is not available (95-98, 82%). A majority endorsed screening without explicit consent (77-88%) for treatable disorders, but 62% supported unpressured choice for screening for untreatable disorders. Qualitatively, participants valued treatment-related benefits for infants and informational benefits for families. Concern for anxiety, stigma and unwanted knowledge depended upon disease context and strength of countervailing benefits. Conclusions Anticipated benefits of expanded infant screening were prioritized over harms, with information provision perceived as a mechanism for mitigating harms and enabling choice. However, we urge caution around the potential for public enthusiasm to foster unlimited uptake of infant screening technologies. [ABSTRACT FROM AUTHOR]

BACKGROUND Genomic testing in cancer (GTC) characterizes genes that play an important role in the development and growth of a patient's cancer. This form of DNA testing is currently being studied for its ability to guide cancer therapy. The objective of the current study was to describe patients' knowledge, attitudes, and expectations toward GTC. METHODS A 42-item self-administered GTC questionnaire was developed by a multidisciplinary group and patient pretesting. The questionnaire was distributed to patients with advanced cancer who were referred to the Princess Margaret Cancer Center for a phase 1 clinical trial or GTC testing. RESULTS Results were reported from 98 patients with advanced cancer, representing 66% of the patients surveyed. Seventy-six percent of patients were interested in learning more about GTC, and 64% reported that GTC would significantly improve their cancer care. The median score on a 12-item questionnaire to assess knowledge of cancer genomics was 8 of 12 items correct (67%; interquartile range, 7-9 of 12 items correct [58%-75%]). Scores were associated significantly with patients' education level ( P < .0001). Sixty-six percent of patients would consent to a needle biopsy, and 39% would consent to an invasive surgical biopsy if required for GTC. Only 48% of patients reported having sufficient knowledge to make an informed decision to pursue GTC whereas 34% of patients indicated a need for formal genetic counseling. CONCLUSIONS Patients with advanced cancer are motivated to participate in GTC. Patients require further education to understand the difference between somatic and germline mutations in the context of GTC. Educational programs are needed to support patients interested in pursuing GTC. Cancer 2014;120:3066-3073. © 2014 American Cancer Society. [ABSTRACT FROM AUTHOR]

The principle that research participants not receive enhanced care compared to non-participants may be challenged by a duty to disclose genetic research results, especially where care is otherwise inaccessible. Autism researchers' attitudes toward providing enhanced care to study participants were analyzed quantitatively using descriptive and multivariate analyses of survey data and qualitatively through thematic analysis of interview data. Approximately half of survey respondents ( n = 168, RR = 44 %) agreed they should provide additional knowledge (52 %) or services (48 %) to study participants that may not be available to non-participants. Qualitatively ( n = 23), respondents were motivated by the notion of reciprocity but highlighted tensions when research enables access to expertise and therapeutic resources that are otherwise difficult to obtain. For researchers, feeling obliged to report research results may be in conflict with the obligation to avoid special treatment of research participants; this may in turn threaten principles of voluntariness, autonomy, and justice. [ABSTRACT FROM AUTHOR]

Objective To examine parents' preferences for drug treatments and health outcomes in juvenile idiopathic arthritis (JIA) and identify demographic and health-related factors that significantly impact choice. Methods A discrete choice experiment was conducted with 105 parents of children with JIA who were cared for by a rheumatologist at The Hospital for Sick Children in Canada. Attributes evaluated included 'drug treatment,' 'child reported pain from arthritis,' 'participation in daily activities,' 'side effects,' 'days missed from school,' and 'cost to you.' Multinomial logit regression was used to estimate the relative importance of each attribute level and interaction term. Results Parents made tradeoffs between characteristics of the drug treatments and health outcomes. 'Participation in daily activities' was the most important attribute, followed by 'child reported pain from arthritis' and 'cost to you.' Parents of children with longer disease durations had stronger preferences for improved participation in daily activities, whereas parents of older JIA patients had stronger preferences for improved control of pain. Conclusion Parents of children with JIA demonstrated strong preferences for treatments that reduce pain and improve daily functioning regardless of the associated side effects, level of responsibility required for drug administration, and days missed from school. Parents of children with longer disease durations and those who had been prescribed aggressive therapies had a greater preference for treatment effectiveness. These findings support the need for considering parental preferences in decisions regarding the choice of treatment for JIA. [ABSTRACT FROM AUTHOR]

Rapid socioeconomic and institutional changes in Vietnam since the early 1990s have opened up new geographical spaces for field research. Reflecting on the experiences of three doctoral student researchers engaged in distinct development geography fieldwork projects in Vietnam, this paper profiles some of the conditions and procedures for carrying out fieldwork in order to serve as a basis for comparison of changing ‘fieldwork possibilities’ in Vietnam and other developing and transitional socialist countries. [ABSTRACT FROM AUTHOR]

Purpose: To present an overview of how documents can be incorporated as key sources of data in qualitative nursing research. Methods: Analysis of the nature of documents and the distinctive features of any research strategy to analyze documents. Conclusions: Many different strategies can be used in the analysis of documentary sources that are relevant to nursing practice. A systematic approach to the analysis of these textual resources, using one or several of the analytic strategies described here, can support and advance nursing scholarship. [ABSTRACT FROM AUTHOR]

The article focuses on significant changes that are taking place across the nations of the Asia-Pacific region due to the change in the attitude of Indigenous peoples and local communities towards their values, knowledge, and practices in resource use, heritage protection, and environmental management. It examines the impact of the change on local natural resource management (NRM) systems. It emphasizes on reconsidering resource geopolitics and environmental governance to manage the change.