1,721,089 research outputs found
The danger of lurking : different conceptualizations of user awareness in social media research
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Deep 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
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Problematizing consent: searching genetic genealogy databases for law enforcement purposes
No full textGenetic genealogy databases have become particularly attractive to law enforcement agencies, especially in the United States (US), which have started to employ genealogists to search them with unknown origin DNA from unidentified human remains (suicides, missing persons) or from a serious crime scene, to help identify the victim, or a potential suspected perpetrator, respectively. While this investigative genetic genealogy (IGG) technique holds much promise, its use – particularly during serious criminal investigations – has sparked a range of social and ethical concerns. Receiving consent for IGG from genetic genealogy database users has been argued as a way to address such concerns. While critiques of the importance of consent are well documented in the biomedical and forensic biobanking literature, this has not been explored for IGG. We sought to address this gap by exploring the views of UK stakeholders. Our research question was: what are UK public and professional stakeholders’ views about the importance of the consent process for IGG when used for serious criminal cases? The methodological approach was interview-based and exploratory. Our analysis identified that all interviewees stressed the importance of consent, though interviewees’ narratives pointed to inadequacies of individual-based consent as an ethical panacea for IGG
The impact of investigative genetic genealogy: perceptions of UK professional and public stakeholders
No full textLaw enforcement authorities in the United States have been increasingly employing genealogists to search genetic genealogy databases with unknown origin DNA from unidentified human remains, or from a serious crime scene, to identify the victim or a potential suspected perpetrator. There are benefits to this form of searching in terms of public safety and bringing justice to victims of crime, and such searches are legally permissible. However, ethical questions arise regarding whether database users have a reasonable expectation that their DNA information will be searched by law enforcement in this way, and so, in turn, questions about consent and privacy have emerged. While initial surveys suggest generally positive support for using genetic genealogy methods, less work has explored the underlying reasons behind this support. We were interested in exploring the perceptions of key stakeholders in the UK with relation to this, specifically for the purposes of solving serious crimes. Through a series of 45 predominantly UK public and stakeholder interviews, we show a general support for the technology, though interviewees were also able to articulate a range of social and ethical concerns. Support was associated with the extent interviewees perceived the technology as impacting the current use of genetic genealogy databases in terms of individual genealogy database users, the genealogy community, and/or genetic genealogy and law enforcement practices. We present our findings and discuss their implications
Civil 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
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
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
The environmental sustainability of data-driven health research: A scoping review
No full textData-Driven and Artificial Intelligence technologies are rapidly changing the way that health research is conducted, including offering new opportunities. This will inevitably have adverse environmental impacts. These include carbon dioxide emissions linked to the energy required to generate and process large amounts of data; the impact on the material environment (in the form of data centres); the unsustainable extraction of minerals for technological components; and e-waste (discarded electronic appliances) disposal. The growth of Data-Driven and Artificial Intelligence technologies means there is now a compelling need to consider these environmental impacts and develop means to mitigate them. Here, we offer a scoping review of how the environmental impacts of data storage and processing during Data-Driven and Artificial Intelligence health-related research are being discussed in the academic literature. Using the UK as a case study, we also offer a review of policies and initiatives that consider the environmental impacts of data storage and processing during Data-Driven and Artificial Intelligence health-related research in the UK. Our findings suggest little engagement with these issues to date. We discuss the implications of this and suggest ways that the Data-Driven and Artificial Intelligence health research sector needs to move to become more environmentally sustainable
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