1,516 research outputs found
The danger of lurking : different conceptualizations of user awareness in social media research
Get PDFPublic trust and ‘ethics review’ as a commodity: the case of Genomics England Limited and the UK’s 100,000 genomes project
Get PDFThe 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
Access to biobanks: responsibilities within a research ecosystem
No full textThe past few decades have seen rapid increases in the size and scope of biobanks, with large-scale publicly funded ventures supporting health-related research becoming the norm. As these biobanks are increasingly asked to share their data, including for example, genome-wide analyses, questions arise about how such decisions are made, including whether applicants' research aligns with the aims of the biobank. To better understand how biobanks make decisions relating to their data use, we sought the views and experiences of those involved in decision-making relating to data access at 11 large-scale publicly funded health biobanks. We were particularly interested in how potentially contentious applications were approached. Interviewees had some concerns about decisions on applications they felt their governance structures could not reach. We ask broader questions about the responsibility of those involved in biobank access decisions-those working early in the research process-when considering such issues
Responsible open science: moving towards an ethics of environmental sustainability
No full textThe integration of open science as a key pillar of responsible research and innovation has led it to become a hallmark of responsible research. However, ethical, social and regulatory challenges still remain about the implementation of an internationally- and multi-sector-recognised open science framework. In this Commentary, we discuss one important specific challenge that has received little ethical and sociological attention in the open science literature: the environmental impact of the digital infrastructure that enables open science. We start from the premise that a move towards an environmentally sustainable open science is a shared and valuable goal, and discuss two challenges that we foresee with relation to this. The first relates to questions about how to define what environmentally sustainable open science means and how to change current practices accordingly. The second relates to the infrastructure needed to enact environmentally sustainable open science ethical and social responsibilities through the open science ethics ecosystem. We argue that there are various ethical obstacles regarding how to responsibly balance any environmental impacts against the social value of open science, and how much one should be prioritised over the other. We call for all actors of the open science ethics ecosystem to engage in discussions about how to move towards open data and science initiatives that take into account the environmental impact of data and digital infrastructures. Furthermore, we call for ethics governance frameworks or policy-inscribed standards of practice to assist with this decision-making
Forensic DNA phenotyping in Europe: views “on the ground” from those who have a professional stake in the technology
No full textForensic DNA phenotyping (FDP) is an emerging technology that seeks to make probabilistic inferences regarding a person’s observable characteristics (“phenotype”) from DNA. The aim is to aid criminal investigations by helping to identify unknown suspected perpetrators, or to help with non-criminal missing persons cases. Here we provide results from the analysis of 36 interviews with those who have a professional stake in FDP, including forensic scientists, police officers, lawyers, government agencies and social scientists. Located in eight EU countries, these individuals were asked for their views on the benefits and problems associated with the prospective use of FDP. While all interviewees distinguished between those phenotypic tests perceived to either raise ethical, social or political concerns from those tests viewed as less ethically and socially problematic, there was wide variation regarding the criteria they used to make this distinction. We discuss the implications of this in terms of responsible technology development
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
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