ORCID Profile
0000-0002-6335-1532
Current Organisations
King's College London
,
Universität Wien
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Sociology | Sociology not elsewhere classified | Public Health and Health Services not elsewhere classified
Publisher: Elsevier BV
Date: 11-2019
DOI: 10.1016/J.FSIGEN.2019.102157
Abstract: Forensic 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 in idual 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.
Publisher: Springer Science and Business Media LLC
Date: 13-10-2014
Publisher: Elsevier BV
Date: 12-2022
Publisher: Routledge
Date: 17-04-2018
Publisher: Elsevier BV
Date: 12-2022
Publisher: Springer Science and Business Media LLC
Date: 25-08-2020
DOI: 10.1007/S11673-020-10016-9
Abstract: Mobile applications are increasingly regarded as important tools for an integrated strategy of infection containment in post-lockdown societies around the globe. This paper discusses a number of questions that should be addressed when assessing the ethical challenges of mobile applications for digital contact-tracing of COVID-19: Which safeguards should be designed in the technology? Who should access data? What is a legitimate role for “Big Tech” companies in the development and implementation of these systems? How should cultural and behavioural issues be accounted for in the design of these apps? Should use of these apps be compulsory? What does transparency and ethical oversight mean in this context? We demonstrate that responses to these questions are complex and contingent and argue that if digital contract-tracing is used, then it should be clear that this is on a trial basis and its use should be subject to independent monitoring and evaluation.
Publisher: Routledge
Date: 06-12-2022
Publisher: Informa UK Limited
Date: 02-06-2021
Publisher: Elsevier BV
Date: 09-2018
Publisher: Routledge
Date: 15-09-2014
Publisher: Wiley
Date: 11-2021
Abstract: The idea of ‘precision medicine’, which has gained increasing traction since the early 2000s, is now ubiquitous in health and medicine. Though varied in its implementation across fields, precision medicine has raised hopes of revolutionary treatments and has spurred the proliferation of novel therapeutics, the alteration of professional trajectories and various reconfigurations of health/care. Nowhere is the promise of precision medicine more apparent, nor further institutionalised, than in the field of oncology. While the transformative potential of precision medicine is widely taken for granted, there remains scant attention to how it is being experienced at the coalface of care. Here, drawing on the perspectives of 54 cancer care professionals gleaned through eight focus group discussions in two hospitals in Australia, we explore clinicians’ experiences of the day‐to‐day dynamics of precision‐in‐practice. We illustrate some of the affective and temporal complexities, analysed here under the rubrics of enchantment, acceleration and distraction that are emerging alongside the uptake of precision medicine in the field of oncology. We argue that these complexities, and their dis/continuities with earlier iterations of cancer care, demonstrate the need for sociological analyses of precision medicine as it is being implemented in practice and its varied effects on ‘routine’ care.
Publisher: Informa UK Limited
Date: 29-11-2019
Publisher: Elsevier BV
Date: 05-2022
DOI: 10.1016/J.GIM.2022.01.002
Abstract: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. We analyzed the "Your DNA, Your Say" online survey of public perspectives on genomic data sharing including responses from 36,268 in iduals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. There is substantial international variation in the extent to which the RoR may motivate people's intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants' preferences for return of genomic results globally should be considered.
Publisher: Springer Science and Business Media LLC
Date: 17-09-2019
DOI: 10.1007/S00439-019-02062-0
Abstract: Trust may be important in shaping public attitudes to genetics and intentions to participate in genomics research and big data initiatives. As such, we examined trust in data sharing among the general public. A cross-sectional online survey collected responses from representative publics in the USA, Canada, UK and Australia ( n = 8967). Participants were most likely to trust their medical doctor and less likely to trust other entities named. Company researchers were least likely to be trusted. Low, Variable and High Trust classes were defined using latent class analysis. Members of the High Trust class were more likely to be under 50 years, male, with children, hold religious beliefs, have personal experience of genetics and be from the USA. They were most likely to be willing to donate their genomic and health data for clinical and research uses. The Low Trust class were less reassured than other respondents by laws preventing exploitation of donated information. Variation in trust, its relation to areas of concern about the use of genomic data and potential of legislation are considered. These findings have relevance for efforts to expand genomic medicine and data sharing beyond those with personal experience of genetics or research participants.
Publisher: Springer Science and Business Media LLC
Date: 25-05-2021
DOI: 10.1186/S13073-021-00903-0
Abstract: Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. We analyse the ‘Your DNA, Your Say’ online survey of public perspectives on genomic data sharing including responses from 36,268 in iduals across 22 low-, middle- and high-income countries, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data—endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally.
Publisher: BMJ
Date: 05-2023
DOI: 10.1136/BMJOPEN-2022-065753
Abstract: To explore informal caregivers’ perspectives on precision medicine in cancer care. Semi-structured interviews with the informal caregivers of people living with cancer and receiving targeted/immunotherapies. Interview transcripts were analysed thematically using a framework approach. Recruitment was facilitated by two hospitals and five Australian cancer community groups. Informal caregivers (n=28 16 men, 12 women aged 18–80) of people living with cancer and receiving targeted/immunotherapies. Thematic analysis identified three findings, centred largely on the pervasive theme of hope in relation to precision therapies including: (1) precision as a key component of caregivers’ hope (2) hope as a collective practice between patients, caregivers, clinicians and others, which entailed work and obligation for caregivers and (3) hope as linked to expectations of further scientific progress, even if there may be no personal, immediate benefit. Innovation and change in precision oncology are rapidly reconfiguring the parameters of hope for patients and caregivers, creating new and difficult relational moments and experiences in everyday life and in clinical encounters. In the context of a shifting therapeutic landscape, caregivers’ experiences illustrate the need to understand hope as collectively produced, as emotional and moral labour, and as entangled in broader cultural expectations of medical advances. Such understandings may help clinicians as they guide patients and caregivers through the complexities of diagnosis, treatment, emerging evidence and possible futures in the precision era. Developing a better understanding of informal caregivers’ experiences of caring for patients receiving precision therapies is important for improving support to patients and their caregivers.
Publisher: JMIR Publications Inc.
Date: 05-11-2020
Abstract: he main German-speaking countries (Germany, Austria, and Switzerland) have implemented digital contact tracing apps to assist the authorities with COVID-19 containment strategies. Low user rates for these apps can affect contact tracing and, thus, its usefulness in controlling the spread of the novel coronavirus. his study aimed to assess the early perceptions of people living in the German-speaking countries and compare them with the frames portrayed in the newspapers during the first wave of the COVID-19 pandemic. e conducted qualitative interviews with 159 participants of the SolPan project. Of those, 110 participants discussed contact tracing apps and were included in this study. We analyzed articles regarding contact tracing apps from 12 newspapers in the German-speaking countries. tudy participants perceived and newspaper coverage in all German-speaking countries framed contact tracing apps as governmental surveillance tools and embedded them in a broader context of technological surveillance. Participants identified trust in authorities, respect of in idual privacy, voluntariness, and temporary use of contact tracing apps as prerequisites for democratic compatibility. Newspapers commonly referenced the use of such apps in Asian countries, emphasizing the differences in privacy regulation among these countries. he uptake of digital contact tracing apps in German-speaking countries may be undermined due to privacy risks that are not compensated by potential benefits and are rooted in a deeper skepticism towards digital tools. When authorities plan to implement new digital tools and practices in the future, they should be very transparent and proactive in communicating their objectives and the role of the technology—and how it differs from other, possibly similar, tools. It is also important to publicly address ethical, legal, and social issues related to such technologies prior to their launch.
Publisher: Elsevier BV
Date: 2022
Publisher: American Association for the Advancement of Science (AAAS)
Date: 03-05-2019
Publisher: Elsevier BV
Date: 03-2023
Publisher: JMIR Publications Inc.
Date: 08-02-2021
DOI: 10.2196/25525
Abstract: The main German-speaking countries (Germany, Austria, and Switzerland) have implemented digital contact tracing apps to assist the authorities with COVID-19 containment strategies. Low user rates for these apps can affect contact tracing and, thus, its usefulness in controlling the spread of the novel coronavirus. This study aimed to assess the early perceptions of people living in the German-speaking countries and compare them with the frames portrayed in the newspapers during the first wave of the COVID-19 pandemic. We conducted qualitative interviews with 159 participants of the SolPan project. Of those, 110 participants discussed contact tracing apps and were included in this study. We analyzed articles regarding contact tracing apps from 12 newspapers in the German-speaking countries. Study participants perceived and newspaper coverage in all German-speaking countries framed contact tracing apps as governmental surveillance tools and embedded them in a broader context of technological surveillance. Participants identified trust in authorities, respect of in idual privacy, voluntariness, and temporary use of contact tracing apps as prerequisites for democratic compatibility. Newspapers commonly referenced the use of such apps in Asian countries, emphasizing the differences in privacy regulation among these countries. The uptake of digital contact tracing apps in German-speaking countries may be undermined due to privacy risks that are not compensated by potential benefits and are rooted in a deeper skepticism towards digital tools. When authorities plan to implement new digital tools and practices in the future, they should be very transparent and proactive in communicating their objectives and the role of the technology—and how it differs from other, possibly similar, tools. It is also important to publicly address ethical, legal, and social issues related to such technologies prior to their launch.
Publisher: SAGE Publications
Date: 23-09-2018
Abstract: Ethical guidance for genomic research is increasingly sought and perceived to be necessary. Although there are pressing ethical issues in genomic research – concerning for ex le the recruitment of patients articipants the process of taking consent data sharing and returning results to patients articipants – there is still limited useful guidance available for researchers/clinicians or for the research ethics committees who review such projects. This report outlines the ethical principles and guidance for genomic research co-produced with stakeholders during two workshops which took place in the UK between November 2016 and May 2017. The stakeholders involved in these workshops included: healthcare professionals, genomic research teams, academics, patients, biobank managers, and representatives from the Health Research Authority (HRA), NHS Research Ethics Committees, patient support groups, pharmaceutical industry, and health policy think tanks. The co-produced principles and guidance are specifically aimed at researchers/clinicians and members of NHS Research Ethics Committees, and are formulated with the intention to be clear and accessible, both in terms of content and language, to these groups.
Publisher: Informa UK Limited
Date: 11-02-2021
Publisher: Springer Science and Business Media LLC
Date: 22-05-2023
DOI: 10.1057/S41292-023-00304-Z
Abstract: Drawing upon 152 in-depth qualitative interviews with residents in Austria carried out in the first year of the pandemic, this article discusses how people’s experiences with COVID-19 policies reflect and reshape state–citizen relations. Coinciding with a significant government crisis, the first year of COVID-19 in Austria saw pandemic measures justified with reference to a biological, often medical understanding of health that framed disease prevention in terms of transmission reduction, often with reference to metrics such as hospitalisation rates, etc. Instead of using this biomedical frame, our interviewees, however, drew attention to biopsychosocial dimensions of the crisis and problematised the entanglements between economy and health. We call this the emergence of a biosocial notion of citizenship that is attentive to psychological, social and economic dimensions of health. Insights into the biosocial nature of pandemic citizenship open a window of opportunity for addressing long-standing social injustices.
Publisher: Springer Science and Business Media LLC
Date: 11-2008
DOI: 10.1038/456034A
Publisher: Springer Science and Business Media LLC
Date: 2017
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Start Date: 2019
End Date: 12-2022
Amount: $470,650.00
Funder: Australian Research Council
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