102 research outputs found
The danger of lurking : different conceptualizations of user awareness in social media research
Full text linkDeep Brain Stimulation in Parkinsonian patients: a critique of adopting the Principlism framework of Bioethics as a form of ethical analysis for the decision-making process
No full textCivil society stakeholder views on forensic DNA phenotyping: balancing risks and benefits
Full text linkForensic DNA phenotyping (FDP) is an umbrella term for practices seeking to infer likely phenotypic characteristics based on crime scene DNA. Specifically, it is intended to help criminal investigators find an unknown suspected perpetrator by providing information about what the suspected perpetrator may look like based on the analysis of DNA left at the crime scene. While many purport the usefulness of FDP in this regard, its probabilistic nature, as well as its ability to disclose information about an individual that may be considered private raises a range of ethical and social concerns. This paper reports findings from interviews with thirty civil society stakeholders across nine European countries. Our findings reflect the wide variation of views in Europe regarding if, when and/or how the technology should be used in the criminal justice system, and we illustrate this by presenting the different ways in which our participants strike a balance between the potential usefulness of the technology, and the various ethical and social considerations
Genomics England’s implementation of its public engagement strategy: Blurred boundaries between engagement for the United Kingdom’s 100,000 Genomes project and the need for public support
Full text link The United Kingdom’s 100,000 Genomes Project has the aim of sequencing 100,000 genomes from National Health Service patients such that whole genome sequencing becomes routine clinical practice. It also has a research-focused goal to provide data for scientific discovery. Genomics England is the limited company established by the Department of Health to deliver the project. As an innovative scientific/clinical venture, it is interesting to consider how Genomics England positions itself in relation to public engagement activities. We set out to explore how individuals working at, or associated with, Genomics England enacted public engagement in practice. Our findings show that individuals offered a narrative in which public engagement performed more than one function. On one side, public engagement was seen as ‘good practice’. On the other, public engagement was presented as core to the project’s success – needed to encourage involvement and ultimately recruitment. We discuss the implications of this in this article. </jats:p
Defining ethical standards for the application of digital tools to population health research
No full textThere is growing interest in population health research which uses methods basedon artificial intelligence. Such research draws on a range of clinical and non-clinicaldata to make predictions about health risks, such as identifying epidemics andmonitoring disease spread. Much of this research uses data from social media in thepublic domain or anonymous secondary health data and is therefore exempt fromethics committee scrutiny. While the ethical use and regulation of digital-basedresearch has been discussed, little attention has been given to the ethicsgovernance of such research in higher education institutions in the field of populationhealth. Such governance is essential to how scholars make ethical decisions andprovides assurance to the public that researchers are acting ethically. We propose aprocess of ethics governance for population health research in higher educationinstitutions. The approach takes the form of review after the research has beencompleted, with particular focus on the role artificial intelligence algorithms play inaugmenting decision-making. The first layer of review could be national, openscience repositories for open-source algorithms and affiliated data or informationwhich are developed during research. The second layer would be a sector-specificvalidation of the research processes and algorithms by a committee of academicsand stakeholders with a wide range of expertise across disciplines. The committeecould be created as an off-shoot of an already functioning national oversight body orhealth technology assessment organization. We use case studies of good practice toexplore how this process might operate
Characterisation of decapentaplegic and other developmental genes in the cnidarian Acropora millepora / Gabrielle Natalie Samuel.
Full text link"March 2002"Addendum inserted at back.Includes bibliographical aspects (leaves 105-117)xi, 117 leaves : ill. (some col.), plates (col.) ; 30 cm.Thesis (Ph.D.)--University of Adelaide, Dept. of Molecular Biosciences, 200
The Ethics Ecosystem : Personal Ethics, Network Governance and Regulating Actors Governing the Use of Social Media Research Data
Full text linkThis paper examines the consequences of a culture of “personal ethics” when using new methodologies, such as the use of social media (SM) sites as a source of data for research. Using SM research as an example, this paper explores the practices of a number of actors and researchers within the “Ethics Ecosystem” which as a network governs ethically responsible research behaviour. In the case of SM research, the ethical use of this data is currently in dispute, as even though it is seemingly publically available, concerns relating to privacy, vulnerability, potential harm and consent blur the lines of responsible ethical research behaviour. The findings point to the dominance of a personal, bottom-up, researcher-led, ‘ethical barometer’ for making decisions regarding the permissibility of using SM data. We show that the use of different barometers by different researchers can lead to wide disparities in ethical practice - disparities which are compounded by the lack of firm guidelines for responsible practice of SM research. This has widespread consequences on the development of shared norms and understandings at all levels, and by all actors within the Ethics Ecosystem, and risks inconsistencies in their approaches to ethical decision-making. This paper argues that this governance of ethical behaviour by individual researchers perpetuates a negative cycle of academic practice that is dependent on subjective judgements by researchers themselves, rather than governed by more formalised academic institutions such as the research ethics committee and funding council guidelines
Public trust and ‘ethics review’ as a commodity: the case of Genomics England Limited and the UK’s 100,000 genomes project
Full text linkThe UK Chief Medical Officer’s 2016 AnnualReport, Generation Genome, focused on a vision to fullyintegrate genomics into all aspects of the UK’s NationalHealth Service (NHS). This process of integration, whichhas now already begun, raises a wide range of social andethical concerns, many of which were discussed in thefinal Chapter of the report. This paper explores how theUK’s 100,000 Genomes Project (100 kGP)—the catalystfor Generation Genome, and for bringing genomics intothe NHS—is negotiating these ethical concerns. The UK’s100 kGP, promoted and delivered by Genomics EnglandLimited (GEL), is an innovative venture aiming to sequence100,000 genomes from NHS patients who have a rare disease,cancer, or an infectious disease. GEL has emphasisedthe importance of ethical governance and decision-making.However, some sociological critique argues that biomedical/technological organisations presenting themselves as ‘ethical’entities do not necessarily reflect a space within whichmoral thinking occurs. Rather, the ‘ethical work’ conducted(and displayed) by organisations is more strategic, relating tothe politics of the organisation and the need to build publicconfidence. We set out to explore whether GEL’s ethicalframework was reflective of this critique, and what this tellsus more broadly about how genomics is being integratedinto the NHS in response to the ethical and social concernsraised in Generation Genome. We do this by drawing on aseries of 20 interviews with individuals associated with orworking at GEL
Who’s talking about non-human Genome Editing? Mapping public discussion in the UK.
Full text linkA cluster of new techniques to modify the genomes of organisms has captured the attention of scientists, other experts and the specialised press. The techniques, commonly referred to as Genome Editing, have spread rapidly throughout the life sciences. Many suggest that they offer revolutionary new applications.Prominent scientists, social scientists and policy organisations have called for public discussion of the ethical, societal and environmental dimensions of Genome Editing. These calls build on historical experience with biotechnologies, which recognises that debate is vital for the development and successful deployment of novel science, technologies and innovations in democratic societies. This debate must be connected to policy, either through direct participation of diverse public groups or through broad-ranging expert representatives.However, with respect to Genome Editing, it is not clear to what extent calls for debate have been acted upon or how they might interface with existing forms discussion in the life sciences. The Wellcome Trust is currently funding research to map Genome Editing and public discussion in human health contexts. This document is complementary and begins a preliminary mapping of public discussion and engagement of Genome Editing in non-human contexts.The review takes a broad perspective of public discussion to identify both formal and informal spaces. This includes parliamentary inquiries, attitude surveys and Public Dialogues but also news reporting, search frequencies, social media spread and physical public events
The Other Side of Silence: Using fiction to explore the resources and limitations in writing about women's lives
Full text linkThis dissertation consists of two distinct components: a creative manuscript, titled “The Other Side of Silence,” and an accompanying exegesis. Both pieces endeavour to answer key questions: What are the different ways fiction might be used to write about the life of a woman from the past? How might we write about such women, taking into account the constraints by which their stories have been forgotten, omitted or displaced? And what are the implications of foregrounding such silences in the writing and reading of narratives?
“The Other Side of Silence” tells the story of Alba, an Italian woman who, with her young family, is leaving her hometown of Salerno for Australia in 1952. The narrative focuses on Alba’s relationship with her mother, Serafina, who fears that Alba’s journey to Australia is motivated by a desire to distance herself from her past. Within this narrative I explore how each of these characters views and consequently deals with the past.
The exegesis discusses several texts that have influenced and inspired “The Other Side of Silence.” In reading contemporary texts about the lives of women in the past, I noted two distinct approaches in the ways women’s stories were written. Some writers use recuperative strategies that allow them to tell stories previously omitted from or distorted by historical discourse and dominant cultural ideologies. By contrast, other writers use poststructuralist narrative strategies to foreground the ways in which traditional realist narratives gloss over the gaps, contradictions and omissions in women’s stories. These alternative narratives indicate how revelation and closure in traditional realism can preclude the probing of some subtle and significant questions about narrating and making sense of women’s experiences. The exegesis examines the different ways writers have challenged and subsequently enlarged conventional notions of realist fiction to imagine and speculate on the possibilities for and limitations on narrative
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