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 idea of a data transfer agreement (DTA) template for the South African (SA) research community is receiving increasing attention. Whiledeveloping such a DTA template is certainly a worthwhile project, questions regarding the project’s practical execution should be addressed,including how to best operationalise the envisioned DTA template, and the content of the envisioned DTA template. It is proposed that anempowerment approach be followed in operationalising the envisioned DTA template, which is contrasted with the regulatory approachfollowed with the material (...) transfer agreement that the Minister of Health promulgated in 2018. While the regulatory approach would entailgovernment making the use of the envisioned DTA template compulsory regardless of the quality of such a template, the empowermentapproach, by contrast, entails a focus on developing a high-quality, professionally drafted DTA template for the SA research community andmaking the use thereof a matter of own choice. Regarding the content of the envisioned DTA template, four hot-button content provisionsare analysed, and it is argued that SA research institutions and researchers should be empowered to: (i) have clarity and legal certaintyregarding their ownership of data, where relevant; (ii) be able to commercialise their research findings without unnecessary contractualconstraints; (iii) avoid falling into the trap of unlawful benefit sharing with research participants; and (iv) be aware that their legal role asresponsible parties, where relevant, cannot be contracted out via a DTA. (shrink)

Large data-intensive health research programmes benefit from collaboration amongst researchers who may be located in different institutions and international contexts. However, complexities in navigating privacy frameworks and data protection laws across various jurisdictions pose significant challenges to researchers seeking to share or transfer data outside of institutional boundaries. Research on the awareness of data protection and privacy laws amongst stakeholders is limited. Our qualitative study, drawn from a larger project in Singapore, revealed insights into stakeholders’ (...) perceptions of the role of law in cross-national health data research. Stakeholders in our study demonstrated a range of perceptions regarding the role of data protection law in governing the collection and transfer of health data for research. The main criticisms included inadequate legal protection to data and lack of uniformed data protection standards. Despite these criticisms, participants recognised the importance of data protection law in supporting cross-border data transfers and proposed measures to improve perceived limitations of existing laws. These measures include strengthening existing legal framework, establishing contractual agreements and imposing severe punishments for data misuse. (shrink)

International transfers of human biological material (biospecimens) and data are increasing, and commentators are starting to raise concerns about how donor wishes are protected in such circumstances. These exchanges are generally made under contractual material transfer agreements (MTAs). This paper asks what role, if any, should research ethics committees (RECs) play in ensuring legal and ethical conduct in such exchanges. It is recommended that RECs should play a more active role in the future development of best practice (...) MTAs involving exchange of biospecimens and data and in monitoring compliance. (shrink)

BackgroundWhenever South African research institutions share human biological material and associated data for health research or clinical trials they are legally compelled to have a material transfer agreement in place that uses as framework the standard MTA newly gazetted by the South African Minister of Health.Main bodyThe article offers a legal analysis of the SA MTA and focuses on its substantive fit with the broader legal environment in South Africa, and the clarity and practicality of its terms. The (...) following problematic aspects of the SA MTA are highlighted: Where only data and no human biological material are transferred, the SA MTA does not apply, leaving a lacuna; Health Research Ethics Committees are required to be parties to a MTA despite it being outside their legal mandate and undermining their oversight function; the SA MTA’s consent provisions are not aligned with extant law; and, similarly, its provision on donor ownership is misaligned with extant law; its creation of fictitious performance can only cause frustration on the part of an injured party; its benefit-sharing provision is vague and will have little practical effect; its dispute-resolution provisions fail to adequately protect South African research institutions and research participants; it fails to provide substantive guidance regarding intellectual property as its provisions relating to intellectual property may cause practical problems; and, finally, its data privacy provision is insufficiently specific, is overbroad, and fails to provide terms that in general would facilitate the international sharing of human biological material and associated data in terms of existing privacy law.ConclusionsWhile some of the problematic aspects of the SA MTA are intricate and require consultative processes with stakeholders and others, to develop comprehensive solutions, most of the problematic aspects can be resolved immediately through amendments by the South African Minister of Health. The formulation of such amendments is proposed and, where possible, interim measures are suggested that may ameliorate the problems presented by the SA MTA. (shrink)

BackgroundThis paper discusses the contentious issue of reuse of stored biological samples and data obtained from research participants in past clinical research to answer future ethical and scientifically valid research questions. Many countries have regulations and guidelines that guide the use and exportation of stored biological samples and data. However, there are variations in regulations and guidelines governing the reuse of stored biological samples and data in Sub-Saharan Africa including Malawi.DiscussionThe current research ethics regulations and guidelines in (...) Malawi do not allow indefinite storage and reuse of biological samples and data for future unspecified research. This comes even though the country has managed to answer pertinent research questions using stored biological samples and data. We acknowledge the limited technical expertise and equipment unavailable in Malawi that necessitates exportation of biological samples and data and the genuine concern raised by the regulatory authorities about the possible exploitation of biological samples and data by researchers. We also acknowledge that Malawi does not have bio-banks for storing biological samples and data for future research purposes. This creates room for possible exploitation of biological samples and data collected from research participants in primary research projects in Malawi. However, research ethics committees require completion and approval of material transfer agreements and data transfer agreements for biological samples and data collected for research purposes respectively and this requirement may partly address the concern raised by the regulatory authorities. Our concern though is that there is no such requirement for biological samples and data collected from patients for clinical or diagnostic purposes.SummaryIn conclusion, we propose developing a medical data and material transfer agreement for biological samples and data collected from patients for clinical or diagnostic purposes in both public and private health facilities that may end up in research centers outside Malawi. We also propose revision of the current research ethics regulations and guidelines in Malawi in order to allow secondary use of biological samples and data collected from primary research projects as a way of maximizing the use of collected samples and data. Finally, we call for consultation of all stakeholders within the Malawi research community when regulatory authorities are developing policies that govern research in Malawi. (shrink)

With biobank research on the increase and the history of exploitation in Africa, it has become necessary to manage the transfer of human tissues across national boundaries. There are many accepted templates of Material Transfer Agreements that currently exist internationally. However, these templates do not address the specific concerns of South Africa and even of Africa as a continent. This article will examine three significantly important ethico-legal concepts that were deliberated and carefully adapted by a South African (...) Institution to suit the transfer of Human Biological Materials and associated data for biobank research, namely: informed consent; benefit sharing arrangements; and ownership together with intellectual property rights in human tissues. The discussion includes an analysis of current practice; the ethico-legal challenges in the South African/African context; the decisions made with regard to how the related ethico-legal challenges were addressed in the MTA; and justifications for implementing these decisions. The processes considered could be of benefit to other developing world countries who consider it necessary to manage the transfer of HBMs across national boundaries. (shrink)

It is common practice for biobanks and biobank researchers to seek funding from agencies that are independent of the biobank that often stipulate conditions requiring researchers to grant access and share biomaterials and data as part of the agreement, in particular, in international collaborative health research. As yet, to the author’s knowledge, there has been no study conducted to examine whether these conditions could result in the commercialization of biomaterials and data and whether such practice is considered ethical. (...) This paper therefore seeks to answer the question of whether such sharing of biomaterials and data for biobank research in exchange for funding from sponsors and funders in collaborative health research is ethically justified. The central idea of this paper is based on an argument against commodification of the body and its parts, which includes biomaterials and data and holds that it is ethically wrong to commodify humans and their body parts. The arguments against commodification of biomaterials and data explored are the Kantian approach argument as it relates to interference of commodification with human dignity which is linked to a diminished sense of personhood, an argument against commodification that is based on a dilution of altruism and lastly the communitarian approach anti-commodification argument which emphasizes a social responsibility to the common good. Arguments in support of commodification based on liberal individualism and consequentialism are also discussed. (shrink)

The form and registration requirements applicable for transfer of close company shares differ in various countries. Discussions on separate related aspects take place in the international business transfer theory and practice. The Lithuanian legal regulation of the said requirements is continually improved, taking into account the experience of other countries and business practice needs. Based on the analysis of the European Union, the Lithuanian and foreign legislation, case law and doctrine, this article is designed for the examination of (...) effectiveness and adequacy of current requirements for the form of share sales transactions as well as expedience of fixing the model of public registration of data about shareholders of a close company. (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)

Background: Sharing of tissue samples for research and disease surveillance purposes has become increasingly important. While it is clear that this is an area of intense, international controversy, there is an absence of data about what researchers themselves and those involved in the transfer of samples think about these issues, particularly in developing countries. Methods: A survey was carried out in a number of Asian countries and in Egypt to explore what researchers and others involved in research, storage (...) and transfer of human tissue samples thought about some of the issues related to sharing of such samples. Results: The results demonstrated broad agreement with the positions taken by developing countries in the current debate, favoring quite severe restrictions on the use of samples by developed countries. Conclusions: It is recommended that an international agreement is developed on what conditions should be attached to any sharing of human tissue samples across borders. (shrink)

Most complex real systems are found to have multiple layers of connectivity and required to be modelled as multiplex networks. One of the extremely critical problems is to reduce the congestion and enhance the transfer capacity, especially in real communication networks with a big data environment. A novel and effective strategy to improve traffic and control congestion is proposed by adding edges according to their weights which are defined by the topology structural properties. Furthermore, which layer is more (...) effective when our strategy is applied is discussed based on its topology structure. Adding edges between nodes whose product of multiplex network betweenness is the highest is confirmed to be more effective, particularly in the layer with stronger community structure. Simulation experiments on both computer-generated and real-world networks demonstrate that our strategy can enhance the transfer capacity of multiplex networks significantly, which is in good agreement with our analysis. (shrink)

A widespread need to explain the behavior and outcomes of AI-based systems has emerged, due to their ubiquitous presence. Thus, providing renewed momentum to the relatively new research area of eXplainable AI (XAI). Nowadays, the importance of XAI lies in the fact that the increasing control transference to this kind of system for decision making -or, at least, its use for assisting executive stakeholders- already affects many sensitive realms (as in Politics, Social Sciences, or Law). The decision-making power handover to (...) opaque AI systems makes mandatory explaining those, primarily in application scenarios where the stakeholders are unaware of both the high technology applied and the basic principles governing the technological solutions. The issue should not be reduced to a merely technical problem; the explainer would be compelled to transmit richer knowledge about the system (including its role within the informational ecosystem where he/she works). To achieve such an aim, the explainer could exploit, if necessary, practices from other scientific and humanistic areas. The first aim of the paper is to emphasize and justify the need for a multidisciplinary approach that is beneficiated from part of the scientific and philosophical corpus on Explaining, underscoring the particular nuances of the issue within the field of Data Science. The second objective is to develop some arguments justifying the authors’ bet by a more relevant role of ideas inspired by, on the one hand, formal techniques from Knowledge Representation and Reasoning, and on the other hand, the modeling of human reasoning when facing the explanation. This way, explaining modeling practices would seek a sound balance between the pure technical justification and the explainer-explainee agreement. (shrink)

The European Union approach to data protection consists of assessing the adequacy of the data protection offered by the laws of a particular jurisdiction against a set of principles that includes purpose limitation, transparency, quality, proportionality, security, access, and rectification. The EU's Data Protection Directive sets conditions on the transfer of data to third countries by prohibiting Member States from transferring to such countries as have been deemed inadequate in terms of the data protection (...) regimes. In theory, each jurisdiction is evaluated similarly and must be found fully compliant with the EU's data protection principles to be considered adequate. In practice, the inconsistency with which these evaluations are made presents a hurdle to international data-sharing and makes difficult the integration of different data-sharing approaches; in the 20 years since the Directive was first adopted, the laws of only five countries from outside of the EU, Economic Area, or the European Free Trade Agreement have been deemed adequate to engage in data transfers without the need for further administrative safeguards. (shrink)

COVID-19 exposed flaws in the law regulating the sharing of data and human biological material. This poses obstacles to the epidemic response, which needs accelerated public health research and, in turn, efficient and legitimate HBM and data sharing. Legal reform and development are needed to ensure that HBM and data are shared efficiently and lawfully. Academics have suggested important legal reforms. The first is the clarification of the susceptibility of HBM and HBM derivatives to ownership, including, inter (...) alia, the promulgation of a revised version of the South African Material Transfer Agreement by the Minister of Health. This would remove uncertainty regarding the current SA MTA’s perpetual donor ownership clause. The second is the development of data trusts, the adoption of open access to research data, and the creation of an African ‘data corridor’. This would ensure that data are protected while allowing for the efficient transfer of data between researchers for the collective good and in the interest of the public. The third is the amendment of the Space Affairs Act to extend the powers of the Council of Space Affairs to include the management of data collected through the utilisation of Earth observation and geographical information systems. This would ensure the protection of outer space data, legislating its use and sharing once it lands on Earth. The implementation of these legal reforms and developments will better prepare SA to face future epidemics from a health research perspective. (shrink)

From a speech given at a conference sponsored by the Electronic Funds Transfer Association (EFTA) on "The Puzzle of Data Security and Consumer Privacy," Washington, DC, 16 November 1992. At that time, Dr. Perry was a Consultant in Advisory Services for the Ethics Resource Center.

Members of research ethics committees (RECs) face a number of ethical challenges when reviewing genomic research. These include issues regarding the content and type of consent, the return of individual research results, mechanisms of sharing specimens and health data, and appropriate community engagement efforts. This article presents the findings from a survey that sought to investigate the opinions and attitudes of REC members from four Arab countries in the Middle East and North Africa (Egypt, Morocco, Sudan, and Jordan) toward (...) these ethical issues. Our findings suggest that efforts are required to better familiarize REC members with the requirements for ethical biobank research. Additionally, we recommend that further research is undertaken with REC members regarding the main items that should be present in the Material Transfer Agreements /Data Transfer Agreements in their corresponding countries and the type of consent that should be used in genomic research. (shrink)

A new approach to information is proposed with the intention of providing a conceptual tool adapted to biology, including a semantic value.Information involves a material support as well as a significance, adapted to the cognitive domain of the receiver and/or the transmitter. A message does not carry any information, only data. The receiver makes an identification by a procedure of recognition of the forms, which activate previously learned significance. This treatment leads to a new significance (or new knowledge).

Data Transfer Service (DTS) is an open-source project that is developing a document-centric message model for describing a bulk data transfer activity, with an accompanying set of loosely coupled and platform-independent components for brokering the transfer of data between a wide range of (potentially incompatible) storage resources as scheduled, fault-tolerant batch jobs. The architecture scales from small embedded deployments on a single computer to large distributed deployments through an expandable ‘worker-node pool’ controlled through message-orientated (...) middleware. Data access and transfer efficiency are maximized through the strategic placement of worker nodes at or between particular data sources/sinks. The design is inherently asynchronous, and, when third-party transfer is not available, it side-steps the bandwidth, concurrency and scalability limitations associated with buffering bytes directly through intermediary client applications. It aims to address geographical–topological deployment concerns by allowing service hosting to be either centralized (as part of a shared service) or confined to a single institution or domain. Established design patterns and open-source components are coupled with a proposal for a document-centric and open-standards-based messaging protocol. As part of the development of the message protocol, a bulk data copy activity document is proposed for the first time. (shrink)

An amendment to this paper has been published and can be accessed via the original article.

Data exclusivity is a temporary exclusive user right on the clinical data that need to be submitted to the regulatory authorities to prove that a new drug is safe and effective. For the pharmaceutical industry, data exclusivity is an important addition to the patent system, as data exclusivity will de facto delay the market entry of generic drugs until after the exclusive user rights on the clinical data have expired. In order to assess the normative (...) legitimacy of the industry’s demand to include minimum standards for data exclusivity in international agreements, this chapter evaluates the three justifications that have frequently been advanced, depicting data exclusivity as an essential policy tool to promote innovation, a mechanism to prevent the generic industry from ‘free-riding,’ and a legal instrument to protect the industry’s property rights in clinical data. (shrink)

Biobanks’ activity is based not only on securing the technology of collecting and storing human biospecimen, but also on preparing formal documentation that will enable its safe use for scientific research. In that context, the issue of informed consent, the reporting of incidental findings and the use of Transfer Agreements remain a vast challenge. This paper aims to offer first–hand tangible solutions on those issues in the context of collaborative and transnational biobanking research. It presents a four‐step checklist (...) aiming to facilitate researchers on their compliance with applicable legal and ethical guidelines, when designing their studies, when recruiting participants, when handling samples and data, and when communicating research results and incidental findings. Although the paper reflects the outcomes of the H2020 B3Africa project and examines the transfers from and to the EU as a case study, it presents a global checklist that can be used beyond the EU. (shrink)

BackgroundBiobanks have recently been established in several low- and middle-income countries in the Arab region of the Middle East. We aimed to explore the views of biobank managers regarding the challenges, ethical issues, and governance arrangements of their biobanks.MethodsIn-depth semi-structured qualitative interviews were conducted with a purposive sample of eight biobank managers from Egypt, Jordan, and Sudan. Interviews were performed either face-to-face, by phone, or via Zoom and lasted approximately 45–75 min. After verbal consent, interviews were recorded and then transcribed. (...) The authors performed a thematic analysis of the transcripts independently and then integrated the themes via a consensus process.ResultsBiobank managers discussed the main challenges in establishing their biobanks. These included the staff’s lack of experience and training, limited funds, deficit awareness of biobanks, obtaining funding from different sources. Only four reported they were active in distributing biospecimens and health data to researchers. Six biobanks used a broad consent model, one used tiered consent, and another allowed participants to opt-out of being recontacted. Five managers avoided partnerships with pharmaceutical companies due to concerns with unfavorable reactions from the community. Five managers did not have clear policies for returning research results to the donors. Five expressed challenges with sample and data sharing with international collaborators; all five used material transfer agreements. The biobank managers revealed variable governance arrangements and activities with community involving awareness and educational efforts rather than active engagement. Several expressed the importance of transparency with the operations of their biobanks and gaining the trust of their stakeholders.ConclusionManagers of biobanks in LMICs in the Arab Middle East encounter financial, operational, and social challenges toward their sustainability efforts. Discussions with key stakeholders are warranted to manage ethical issues involving informed consent, privacy, data sharing, and the return of results. We recommend that biobank managers in the Arab Middle East form collaborative networks within the region and internationally, develop trusting governance relationships with their stakeholders, and pursue engagement activities with their communities to enhance trust. (shrink)

With the emergence of service provisioning environments and new networking capabilities, antagonistic businesses have been able to collaborate securely by sharing information in order to have a beneficial result for all. This collaboration has sometimes been imposed by state legislation and sometimes been desirable by the firms themselves so as to resolve frequently occurring abnormalities. In any case, as information exchange takes place between antagonistic firms, security and privacy issues arise. In the context of this paper, a collaborative environment has (...) been analyzed for enterprises that set out in the banking sector. A Grid-based Anti-Money Laundering (AML) system has been developed in an effort to take advantage of the Grid infrastructure, supporting the secure and trustful exchange of information between financial institutions and ensuring the confidentiality of the data transferred and the authentication of the users to whom they are available. Special emphasis is put on security mechanisms for supporting identity and privacy management as well as in Service Level Agreements (SLA) enforcement for enabling a trust enforcement platform in a collaboration business model. (shrink)

BackgroundEvery year, research specimens are shipped from one institution to another as well as across national boundaries. A significant proportion of specimens move from poor to rich countries. Concerns are always raised on the future usage of the stored specimens shipped to research insitutions from developing countries. Creating awareness of the processes is required in all sectors involved in biomedical research. To maintain fairness and respect in sharing biomedical specimens and reserch products requires safeguarding by Ethics Review Committees in both (...) provider and recepient institutions. Training in basic ethical principles in research is required to all sectors involved in biomedical research so as to level up the research playing field.DiscussionBy agreeing to provide specimens, individuals and communities from whom samples are collected would have placed their trust and all ensuing up-keep of the specimens to the researchers. In most collaborative set-up, laid down material transfer agreements are negotiated and signed before the shipment of specimens. Researchers, research ethics committees and institutions in the countries of origin are supposed to serve as overseers of the specimens. There is need to advocate for honesty in sample handling and sharing, and also need to oversee any written commitments by researchers, RECs and institutions at source as well as in recipient institution. Commitments from source RECs and Institutional Review Boards and in the receiving institution on overseeing the future usage of stored specimens are required; including the ultimate confirmation abiding by the agreement. Training in ethical issues pertaining to sample handling and biomedical research in general is essential at all levels of academic pursuit. While sharing of biological specimens and research data demands honesty and oversight by ethical regulatory agents from both institutions in developing country and recepient institutions in developed countries.Concluding summaryArchiving of biological specimens requires reconsideration for the future of biomedical findings and scientific break-throughs. Biomedical ethical regulations still need to established clear viable regulations that have vision for the future of science through shared and archived samples. This discussion covers and proposes essential points that need to be considered in view of future generations and scientific break-throughs. The discussion is based on the experience of working in resource-limited settings, the local regulatory laws and the need to refine research regulations governing sharing and storage of specimens for the future of science. (shrink)

BackgroundHuman biological materials are usually stored for possible future use in research because they preserve valuable biological information, save time and resources, which would have been spent on collection of fresh samples. However, use of these materials may pose ethical challenges such as unauthorized disclosure of genetic information, which can result in dire consequences for individuals or communities including discrimination, stigma, and psychological harm; has biosecurity implications; and loss of control or ownership of samples or data. To understand these (...) problems better, we evaluated the extent to which tuberculosis (TB) clinical research protocols that were used to collect and store biological materials for future use conform to the requirements stated in the Uganda national guidelines for research involving humans as participants.MethodsThis was a retrospective review of TB clinical research projects approved by the Uganda National Council for Science and Technology (UNCST) from 2011 to 2015, to examine whether they fulfilled the requirements for ethical collection and use of human materials. Data were abstracted through review of the project protocols using a template developed based on the informed consent and the Materials Transfer Agreement (MTA) requirements in the national guidelines.ResultsOut of 55 research protocols reviewed, most of the protocols 83.6% had been used to collect the stored samples (sputum, blood and sometimes urine), 28% had a section on specimen collection and 24% mentioned ownership of the biological materials. With respect to review of the consent forms used in the studies that stored materials for future use, only 9% of the protocols had a separate consent form for storage of materials, 4.5% of the consent forms explained the risks, 11.4% explained the purpose of the study while 6.8% mentioned the place of storage for the collected materials.ConclusionMany of the studies reviewed did not meet the requirements for collection and storage of biological materials contained in the national guidelines, which indicates a need to additional training on this topic. (shrink)

This study puts the usage-based assumption that our linguistic knowledge is based on usage to the test. To do so, we explore individual variation in speakers’ language use as established based on corpus data – both in terms of frequency of use and productivity of use – and link this variation to the same participants’ responses in an experimental judgment task. The empirical focus is on transfer by native German speakers living in the Netherlands, who oftentimes experience (...) class='Hi'>transfer from their second language Dutch to their native language German regarding the placement of prepositional phrases. The analyses show a large amount of variation in both the corpus and experimental data with a strong link across data types: individual speakers’ usage – but not the usage by other speakers – is a significant predictor for the speakers’ judgments. These results strongly suggest that, in line with a usage-based approach, variation between speakers in experimental tasks is linked to their variation in usage. At the same time, such usage-based predictions do not explain all of the variation, suggesting that other individual factors are also at play in such experimental tasks. (shrink)

Cognitive control processes, such as updating task-relevant information while switching between multiple tasks, are substantially impaired in older adults. However, it has also been shown that these cognitive control processes can be improved by training interventions, e.g., by training in task switching. Here, we applied an event-related potential approach to identify whether a cognitive training improves task-preparatory processes such as updating of relevant task goals. To do so, we applied a pretest-training-posttest design with eight training sessions. Two groups of older (...) adults were either trained in task switching or in performing single tasks and we compared their performance to a group of untrained younger adults. To foster cue updating in the treatment group, we applied a cue-based switching task in which the two task cues were randomly selected prior to target presentation so that participants had time to prepare for the upcoming task. In contrast, the control group also received task cues but those were redundant as only one task had to be performed. We also examined whether training in cue updating during task switching can be transferred to a similar cognitive control task measuring updating of context information, namely a modified version of the AX-Continuous Performance Task. The results revealed training-specific improvements in task switching, that is, a larger improvement in blocks requiring switching in comparison to single tasks at the behavioral level. In addition, training specific-effects were also found at the neuronal level. Older adults trained in cue updating while switching showed a reduction in mixing costs in the cue-related P3, indicating an improvement in preparatory updating processes. Additionally, P3 topography changed with training from a very broad to a parietally focused scalp distribution similar to the one found in younger adults. However, we did not obtain training-specific improvements in context updating in the AX-CPT neither at the behavioral level nor at the neuronal level. Results are discussed in the context of the ongoing debate on whether transfer of cognitive training improvements is possible. (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)

A feature of the agro-industrial sphere is the high probability of distribution of production or research sites in areas far from each other for a considerable distance. Moreover, the center for collecting information and processing it, as a rule, is concentrated in one compact place. For research institutions, this feature often acquires a state of rather urgent problem, which requires the search for new innovative approaches. The paper proposes elements of the concept of construction and technological solutions for methods of (...) operational data transfer of field research from agricultural areas to a remote database for data storage with the possibility of feedback. As an example, the procedure of qualification examination of plant varieties with the definition of the criteria of "difference, homogeneity and stability" and "suitability for propagation of the variety in Ukraine" was chosen. (shrink)

A feature of the agro-industrial sphere is the high probability of distribution of production or research sites in areas far from each other for a considerable distance. Moreover, the center for collecting information and processing it, as a rule, is concentrated in one compact place. For research institutions, this feature often acquires a state of rather urgent problem, which requires the search for new innovative approaches. The paper proposes elements of the concept of construction and technological solutions for methods of (...) operational data transfer of field research from agricultural areas to a remote database for data storage with the possibility of feedback. As an example, the procedure of qualification examination of plant varieties with the definition of the criteria of "difference, homogeneity and stability" and "suitability for propagation of the variety in Ukraine" was chosen. (shrink)

Transfers of critically ill neonates are frequent phenomena. Even though parents’ participation is regarded as crucial in neonatal care, a transfer often means that parents and neonates are separated. A systematic review of the parents’ experiences of neonatal transfer is lacking. This paper describes a meta‐study addressing qualitative research about parents’ experiences of neonatal transfer. Through deconstruction and reflections of theories, methods, and empirical data, the aim was to achieve a deeper understanding of theoretical, empirical, contextual, (...) historical, and methodological issues of qualitative studies concerning parents’ experiences of neonatal transfer over the course of this meta‐study (2000–2017). Meta‐theory and meta‐method analyses showed that caring, transition, and family‐centered care were main theoretical frames applied and that interviewing with a small number of participants was the preferred data collection method. The meta‐data‐analysis showed that transfer was a scary, unfamiliar, and threatening experience for the parents; they were losing familiar context, were separated from their neonate, and could feel their parenthood disrupted. We identified ‘wavering and wandering’ as a metaphoric representation of the parents’ experiences. The findings add knowledge about meta‐study as an approach for comprehensive qualitative research and point at the value of meta‐theory and meta‐method analyses. (shrink)

Fieldwork is one of the important methods in educational, social, and organisational research. In fieldwork, the researcher takes residence for a shorter or longer period amongst the subjects and settings to be studied. The aim of this is to study the culture of people: how people seem to make sense of their lives and which moral, professional, and ethical values seem to guide their behaviour and attitudes. In fieldwork, the researcher has to balance participation and observation in her attempts at (...) representation. Consequently, the researcher's academic and life-historical subjectivity are important filters for fieldwork. In general, fieldwork can be understood as processes where field reports and field analysis are determined by how the researcher interacts with and experiences the field, the events and informants in it, and how she subsequently develops an ethnography. However, fieldwork is also subjected to psychodynamic processes. In this article, I draw upon a number of research inquiries to illustrate how psychodynamic processes influence research processes: data production, research questions and methodology, relations to informants, as well as interpretation and analysis. I further investigate through a case study how the psychoanalytical concepts of "transference" and "institutional transference" can provide insight into the dynamics of efficiency and democracy at a number of Danish human service organisations. (shrink)

This article presents a cognitive map proposed to be associated with understanding of the “system concept,” one component of the physics principle of Newton's second low. A definition of the concept is followed by the results of a problem‐solving experiment designed to investigate whether or not good problem solvers possess cognitive structures similar to the one proposed. Think‐aloud protocols were collected as subjects solved a series of physics problems involving Newton's second law. Coding schemes were used to analyze these protocols (...) and to develop a quantitative index intended to reflect the extent to which subjects possessed certain components of the proposed structure. This index proved a highly significant predictor of performance on Newton's second law transfer problems contained in a written exam. In contrast, performance on a set of familiar problems in the same written exam was not a good predictor of performance on transfer problems. These results indicate that cognitive structures that connect the equation ΣF = ma and the concept of choosing appropriate systems are at least part of what constitutes understanding of the principle of Newton's second law. Implications for physics education and problem‐solving research are presented. (shrink)

Most work at the intersection of law and the philosophy of action focuses on criminal responsibility. Unfortunately, this focus has been at the expense of reflecting on how the philosophy of action might help illuminate our understanding of issues in civil law. In this essay, focusing on Anglo-American jurisprudence, we examine the conditions under which a party to a legal agreement is deemed to have the capacity required to be bound by that agreement. We refer to this condition as the (...) capacity condition. We begin by showing how recent work on the metaphysics of powers might ground an account of the role of capacities in the metaphysics of intentional agency. After discussing the capacity to contract in Anglo-American jurisprudence, we show how the general ontology of capacities and agency sketched can ground and help clarify legal thinking about capacity. We argue that when we couple our understanding of capacity with relevant recent data from developmental neuropsychology, a lacuna in Anglo-American contract law becomes evident. Specifically, it appears that persons in early adulthood do not clearly satisfy the conditions requisite for them to satisfy the capacity condition. In the light of this, we sketch some potential solutions that are compatible with existing legal standards and would contribute to a more consistent application of the capacity condition in contract law. (shrink)

Abstract Background The first live birth following the use of a new reproductive technique, maternal spindle transfer (MST), which is a mitochondrial replacement technique (MRT), was accomplished by dividing the execution of the MST procedure between two countries, the USA and Mexico. This was done in order to avoid US legal restrictions on this technique. -/- Sources of data Academic articles, news articles, documents obtained through freedom of information requests, laws, regulations and national reports. -/- Areas of agreement (...) MRTs are new reproductive techniques that present novel ethical and legal challenges, since genetic material from three people is employed to create a child. -/- Areas of controversy Could the first MST procedure that culminated in a live birth negatively impact reproductive medicine in Mexico? -/- Growing points The USA and Mexico need specific and clear legislation on MRTs, in order for such techniques not to be governed by prior existing legislation on assisted reproduction that is inadequate for dealing with the new challenges that these techniques present. -/- Areas timely for developing research There is a pressing need for work to be done on the international governance of new reproductive techniques. (shrink)

Derek Parfit's Reasons and Persons (1984) mounted a striking defense of Act Consequentialism against a Rawls-inspired Kantian orthodoxy in moral philosophy. On What Matters (2011) is notable for its serious engagement with Kant's ethics and for its arguments in support of the “Triple Theory,” which allies Rule Consequentialism with Kantian and Scanlonian Contractualism against Act Consequentialism as a theory of moral right. This critical notice argues that what underlies this change is a view of the deontic concept of moral rightness (...) that ties it closely to blameworthiness and accountability in a way that effectively concedes a Rawlsian publicity condition. It is also argued that Parfit's arguments that Kantian and Scanlonian Contractualism entail Rule Consequentialism can be resisted. Two elements of Parfit's metaethics are critically discussed. First, concerning Parfit's arguments against subjectivist theories of practical reason, it is argued that a form of subjectivist theory exists that is not only consistent with Parfit's claim that all reasons for acting are object rather than state given, but that can support that claim. Second, it is argued that Parfit's arguments against identifying normative with natural statements and facts do not transfer seamlessly to identifying normative with natural properties. (shrink)

Empirical agreement is often used as an important criterion when assessing the validity of scientific models. However, it is by no means a sufficient criterion as a model can be so adjusted as to fit available data even though it is based on hypotheses whose plausibility is known to be questionable. Our aim in this paper is to investigate into the uses of empirical agreement within the process of model validation.

We examine the short-term and long-term impact of bilateral agreements on migrant workers’ vulnerability during their employment in Israel. To do so, we developed the Vulnerability Index of Migrant Workers based on five dimensions: poor working conditions, poor living conditions, poor safety conditions, low wages, and dependence on migration costs. We focus on migrant workers arriving in Israel from two different countries, employed in two different sectors of the economy. Data was gathered through a survey conducted among workers (...) arriving from both countries before and after the implementation of the bilateral agreements. The study revealed that after the implementation of bilateral agreements, the working, living and safety conditions of migrant workers remained poor or even worsened. For Thai workers, there was a slight improvement in the working and living conditions in the short term after the bilateral agreement, but they worsened in the long run. The total Index of Vulnerability of both groups showed improvement due to the dramatic decrease in dependence on migration costs, despite the deterioration in some working and living conditions and the reduction in migrant workers’ relative wages. (shrink)

The use of genetically modified organisms in agriculture makes great promises of better seeds, but also raises many controversies about ownership of seeds and about potential hazards. I suggest that owners of these seeds bear the responsibility to do no harm in using these seeds. After defining the nature of this responsibility, this paper asks, if ownership entails moral responsibility, and ownership can be transferred, then how is moral responsibility transferred? Building on the literature on use plans, I suggest five (...) conditions for a good transfer of moral responsibility for genetically modified seeds. I also look at the Monsanto Technology Use Guide and Technology/Stewardship Agreement, as an examplar of a use plan, to explore the extent to which these conditions are present. I conclude that use plans can play a role in the distribution and transfer of moral responsibility for technologies with high benefits and potential harmful uncertainties. (shrink)

We live in the Information Age. Advances over the past 50 years in computing technology have enabled ever-expanding capacity to generate, store, transfer, process and analyse information about people, societies, products, services, the environment—nearly every aspect of the world. In parallel, concerns over how such data is being used have emerged, focusing especially on issues of privacy and confidentiality. Yet as technological capabilities continue to expand, the debate over ethical uses of data inevitably has evolved as well. (...) Whereas we used to just talk about data, now there is great concern over Big Data. This chapter explores what, exactly, Big Data is; the ethical ramifications of its emergence, particularly for consent and anonymization; and what sorts of policy solutions are being proposed to address these emerging challenges. We will not defend one particular approach, but hope this chapter can be a useful reference for those who are contemplating difficult questions surrounding responsible management of Big Data. (shrink)

The ongoing coronavirus 2019 pandemic caused by the severe acute respiratory syndrome coronavirus 2 has resulted in a severe ramification on the global healthcare system, principally because of its easy transmission and the extended period of the virus survival on contaminated surfaces. With the advances in computer-aided diagnosis and artificial intelligence, this paper presents the application of deep learning and adversarial network for the automatic identification of COVID-19 pneumonia in computed tomography scans of the lungs. The complexity and time limitation (...) of the reverse transcription-polymerase chain reaction swab test makes it disadvantageous to depend solely on as COVID-19’s central diagnostic mechanism. Since CT imaging systems are of low cost and widely available, we demonstrate that the drawback of the RT-PCR can be alleviated with a faster, automated, and reduced contact diagnostic process via the use of a neural network model for the classification of infected and noninfected CT scans. In our proposed model, we explore the benefit of transfer learning as a means of resolving the problem of inadequate dataset and the importance of semisupervised generative adversarial network for the extraction of well-mapped features and generation of image data. Our experimental evaluation indicates that the proposed semisupervised model achieves reliable classification, taking advantage of the reflective loss distance between the real data sample space and the generated data. (shrink)

The prevailing assumption is that anResearch underlying this study was conducted with support of the Russian Foundation for Basic Research grant #17-06-00460.agreement feature originates in one linguistic element, that is a controller, and is copied onto another one, a target. This form-to-form approach encounters massive difficulties when confronted with data, such as missing controllers or feature mismatches. A cognition-to-form mapping approach is proposed instead, suggesting that agreement features, such as person, number, and gender, are associated with referents in the (...) cognitive representation. They serve to specify referents on either notional or conventional grounds, and are thus referential features. Referential features are mapped onto various sites in linguistic structure, including inflections. Parallel agreement between various sites is observed, as a side effect of mappings from the same cognitive source. Languages differ in which and how many sites for marking referential features they require. Analysis of Russian evidence suggests that the cognition-to-form mapping approach has a much greater explanatory force than the traditional form-to-form approach. There are only peripheral classes of instances in which form-to-form agreement may be needed as a supplementary factor. In general, the roots of agreement lie in cognitively motivated discourse processes associated with reference. (shrink)

The question whether and in what way languages and language use involve convention is addressed, With special reference to David Lewis's account of convention in general. Data are presented which show that Lewis has not captured the sense of 'convention' involved when we speak of adopting a linguistic convention. He has, In effect, attempted an account of social conventions. An alternative account of social convention and an account of linguistic convention are sketched.

The prevailing assumption is that an Research underlying this study was conducted with support of the Russian Foundation for Basic Research grant #17-06-00460.agreement feature originates in one linguistic element, that is a controller, and is copied onto another one, a target. This form-to-form approach encounters massive difficulties when confronted with data, such as missing controllers or feature mismatches. A cognition-to-form mapping approach is proposed instead, suggesting that agreement features, such as person, number, and gender, are associated with referents in (...) the cognitive representation. They serve to specify referents on either notional or conventional grounds, and are thus referential features. Referential features are mapped onto various sites in linguistic structure, including inflections. Parallel agreement between various sites is observed, as a side effect of mappings from the same cognitive source. Languages differ in which and how many sites for marking referential features they require. Analysis of Russian evidence suggests that the cognition-to-form mapping approach has a much greater explanatory force than the traditional form-to-form approach. There are only peripheral classes of instances in which form-to-form agreement may be needed as a supplementary factor. In general, the roots of agreement lie in cognitively motivated discourse processes associated with reference. (shrink)