The meanings of consent to the donation of cord blood stem cells: perspectives from an interview-based study of a public cord blood bank in England

This paper explores the perspectives of women who have agreed that their umbilical cord blood may be collected for a public ‘cord blood bank’, for use in transplant medicine or research. Drawing on interview data from 27 mothers who agreed to the collection and use of their umbilical cord blood, these choices and the informed consent process are explored. It is shown that the needs of sick children requiring transplants are prominent in narrative accounts of cord blood banking, together with high expectations for future applications of stem cells. Given this dynamic, a concern arises that the complex and multiple uses of tissues and related data might be oversimplified in the consent process. In conclusion, the positive finding of a commitment to mutuality in cord blood banking among these women is underlined, and its implications for the wider debate on cord blood banking are discussed

Evaluation of patient perception towards dynamic health data sharing using blockchain based digital consent with the Dovetail digital consent application : a cross sectional exploratory study

Background New patient-centric integrated care models are enabled by the capability to exchange the patient’s data amongst stakeholders, who each specialise in different aspects of the patient’s care. This requires a robust, trusted and flexible mechanism for patients to offer consent to share their data. Furthermore, new IT technologies make it easier to give patients more control over their data, including the right to revoke consent. These characteristics challenge the traditional paper-based, single-organisation-led consent process. The Dovetail digital consent application uses a mobile application and blockchain based infrastructure to offer this capability, as part of a pilot allowing patients to have their data shared amongst digital tools, empowering patients to manage their condition within an integrated care setting. Objective To evaluate patient perceptions towards existing consent processes, and the Dovetail blockchain based digital consent application as a means to manage data sharing in the context of diabetes care. Method Patients with diabetes at a General Practitioner practice were recruited. Data were collected using focus groups and questionnaires. Thematic analysis of the focus group transcripts and descriptive statistics of the questionnaires was performed. Results There was a lack of understanding of existing consent processes in place, and many patients did not have any recollection of having previously given consent. The digital consent application received favourable feedback, with patients recognising the value of the capability offered by the application. Patients overwhelmingly favoured the digital consent application over existing practice. Conclusions Digital consent was received favourably, with patients recognising that it addresses the main limitations of the current process. Feedback on potential improvements was received. Future work includes confirmation of results in a broader demographic sample and across multiple conditions

Dwarna : a blockchain solution for dynamic consent in biobanking

Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna—a web portal for ‘dynamic consent’ that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners’ consent in a blockchain to create an immutable audit trail of research partners’ consent changes. Dwarna’s structure also presents a solution to the European Union’s General Data Protection Regulation’s right to erasure—a right that is seemingly incompatible with the blockchain model. Dwarna’s transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.peer-reviewe

Animal-Computer Interaction: a Manifesto (2011) and sections from Towards an Animal-Centred Ethics for Animal-Computer Interaction (2016)

Reprint of journal article "Animal-Computer Interaction: a Manifesto" (2011) and of sections of journal article "Towards an Animal-Centred Ethics for Animal-Computer Interaction" (2016

Ethics in educational research: review boards, ethical issues and researcher development

Educational research, and research in the Social Sciences more generally, has experienced a growth in the introduction of ethical review boards since the 1990s. Increasingly, universities have set up ethics review procedures that require researchers to submit applications seeking approval to conduct research. Review boards and the rules and conditions under which they operate have been criticised as obstructive, unnecessarily bureaucratic, and even unethical. At the same time, review boards and their procedures have been acknowledged as contributing to consideration of the ethical conduct of research. This paper explores the issues related to ethical review and examines the wider ethical considerations that may arise during the research process. The paper concludes that a purely administrative process of review is inadequate to ensure the ethical conduct of research, especially qualitative research. Rather, it is argued that ethical research entails the resolution of a potential series of ethical dilemmas as they arise during research. As such, the ethical conduct of research is a matter of researcher formation and development

Supporting the clinical trial recruitment process through the grid

Patient recruitment for clinical trials and studies is a large-scale task. To test a given drug for example, it is desirable that as large a pool of suitable candidates is used as possible to support reliable assessment of often moderate effects of the drugs. To make such a recruitment campaign successful, it is necessary to efficiently target the petitioning of these potential subjects. Because of the necessarily large numbers involved in such campaigns, this is a problem that naturally lends itself to the paradigm of Grid technology. However the accumulation and linkage of data sets across clinical domain boundaries poses challenges due to the sensitivity of the data involved that are atypical of other Grid domains. This includes handling the privacy and integrity of data, and importantly the process by which data can be collected and used, and ensuring for example that patient involvement and consent is dealt with appropriately throughout the clinical trials process. This paper describes a Grid infrastructure developed as part of the MRC funded VOTES project (Virtual Organisations for Trials and Epidemiological Studies) at the National e-Science Centre in Glasgow that supports these processes and the different security requirements specific to this domain

CamFlow: Managed Data-sharing for Cloud Services

A model of cloud services is emerging whereby a few trusted providers manage the underlying hardware and communications whereas many companies build on this infrastructure to offer higher level, cloud-hosted PaaS services and/or SaaS applications. From the start, strong isolation between cloud tenants was seen to be of paramount importance, provided first by virtual machines (VM) and later by containers, which share the operating system (OS) kernel. Increasingly it is the case that applications also require facilities to effect isolation and protection of data managed by those applications. They also require flexible data sharing with other applications, often across the traditional cloud-isolation boundaries; for example, when government provides many related services for its citizens on a common platform. Similar considerations apply to the end-users of applications. But in particular, the incorporation of cloud services within `Internet of Things' architectures is driving the requirements for both protection and cross-application data sharing. These concerns relate to the management of data. Traditional access control is application and principal/role specific, applied at policy enforcement points, after which there is no subsequent control over where data flows; a crucial issue once data has left its owner's control by cloud-hosted applications and within cloud-services. Information Flow Control (IFC), in addition, offers system-wide, end-to-end, flow control based on the properties of the data. We discuss the potential of cloud-deployed IFC for enforcing owners' dataflow policy with regard to protection and sharing, as well as safeguarding against malicious or buggy software. In addition, the audit log associated with IFC provides transparency, giving configurable system-wide visibility over data flows. [...]Comment: 14 pages, 8 figure

Governance of a complex system: water

This paper sets out a complex adaptive systems view of water governance. Overview Fresh water is a life - enabling resource as well as the source of spiritual, social and economic wellbeing and development. It is continuously renewed by the Earth’s natural recycling systems using heat from the sun to evaporate and purify, and then rain to replenish supplies. For thousands of years people have benefited from these systems with little concern for their ability to keep up with human population and economic development. Rapid increases in population and economic activity have brought concern for how these systems interact with human social and economic systems to centre stage this century in the guise of a focus on water governance. What do we mean by governance and how might we better understand our water governance systems to ensure their ongoing sustainability? This paper sets out a complex adaptive systems view of water governance. It draws on the academic literature on effective governance of complex systems and effective water governance to identify some principles for use in water governance in New Zealand. It illustrates aspects of emerging water governance practice with some examples from New Zealand which have employed a multi-actor, collaborative governance approach. The paper concludes with some implications for the future evolution of effective water governance in New Zealand. Collaborative governance processes are relatively unfamiliar to New Zealand citizens, politicians and other policy actors which makes it more important that we study and learn from early examples of the use of this mode of governance