1,516 research outputs found

    From waste product to blood, brains and narratives : developing a pluralist sociology of contributions to health research

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    Funded by National Institute for Health Research (NIHR) Oxford Biomedical Research CentrePeer reviewedPublisher PD

    Data-driven precision medicine:PreMed phase 2 report

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    Data-driven precision medicine:PreMed phase 2 report

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    Towards 'engagement 2.0': insights from a study of dynamic consent with biobank participants

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    Web 2.0 technologies have enabled new methods of engagement, moving from static mono-directional sources of information to interactive user-led experiences. Use of Web 2.0 technologies for engagement is gaining momentum within the health sector however this is still in its infancy in biobanking research. This paper reports on findings from focus groups with biobank participants to gauge their views on a Web 2.0 dynamic consent interface. The findings from this study suggest that participants would welcome more interactive engagement with biobanks, and the opportunity to hear more about how their data and samples are being used in research. We propose that by adopting Web 2.0 tools for dynamic consent, we can move towards an ‘Engagement 2.0’ model whereby research participants have the opportunity for more interactive engagement with medical research, setting up a two-way communication channel between participants and researchers, for the benefit of both

    Biobanking from the patient perspective

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    Biobanks and biobanking research plays an increasingly important role in healthcare research and delivery as health systems become more patient-centred and medicine becomes more personalised. There is also growing acceptance and appreciation of the value that patients, patient advocacy organisations and the public can bring as stakeholders in biobanking and more generally in research. Therefore, the importance of active, early and sustained engagement and involvement of patient and public representatives in biobanks will become increasingly relevant. Organising and facilitating patient and public involvement in biobanking takes considerable time and effort for all stakeholders involved. Therefore, for any biobank operator considering involving patients and the public in their biobanking activities, consideration of best practices, current guidance, ethical issues and evaluation of involvement will be important. In this article, we demonstrate that patients are much more than donors to biobanks—they are collaborators at the heart of biobanking with an important voice to identify perspective, which can be an extremely valuable resource for all biobanks to utilise. The case studies herein provide examples of good practice of patient involvement in biobanking as well as outcomes from these practices, and lessons learned. Our aim is to provide useful insights from these efforts and potential future strategies for the multiple stakeholders that work with patients and the public involved in biobank-based research

    Values of trust and participation in scientific data repositories

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    Digitalisation has stimulated the generation, storage and use of data. Moreover, it has created new research opportunities, including for biomedical science. The use of 'big data' can be decisive for better understanding and improving health. However, this change is disruptive, as it alters the flow of information and ideas about research and knowledge acquisition. Previous studies show that different forms of trust are key for understanding participation and non-participation in data repository. Therefore, in this multidisciplinary project we investigated the factors associated with participation and non-participation in data repositories in different ways. Our results show that societal trust, such as trust in government and other individuals, and pro-social values - defined here as involving others (their interest) - partially explain the different views and choices of participants and non-participants. We demonstrate the dilemma of contributing to society without ignoring individual interests and concerns. Moreover, we show how participants, ex-participants and non-participants deal with this differently. As such, the study is one of the first to indicate how trust can influence willingness to participate and specially to stop participating, depending on beliefs about society and appreciation of the context of data collection. The research has several implications and suggests various interventions to address ethical and practical concerns. In this way, this dissertation and subsequent research will help to determine how to proceed with large-scale data repository on health-related and other socially relevant topics

    Biomedical ethics and genetic epidemiology

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    Biomedical ethics developed in the late twentieth century as a challenge to the self- regulatory ethic that previously governed medical practice. Yet in recent years bioethics has come under scrutiny from the social sciences, which claim that the field relies upon an idealised notion of moral agency and fails to consider the extent to which ethical discourse is embedded in a wider societal context. In addition, bioethical concepts such as patient autonomy and informed consent have also recently been challenged by the rise of genetic medicine. After evaluating debates in the historical and philosophical development of biomedical ethics, this thesis uses a case study in genetic epidemiology (commonly referred to as biobanking) to examine competing normative and empirical claims made by bioethicists and social scientists. The study investigates the views and experiences of potential donors to a biobank in north-west England. Data analysis gives particular emphasis to socio-ethical issues such as consent, genetic donation, altruism, and benefit-sharing. Evidence from the case study illustrates that bioethics is susceptible to many of the charges levelled against it - namely that it lacks proper understanding of the processes by which moral concepts and categories are embedded in ongoing forms of social practice and experience. The thesis concludes with suggestions as to how bioethics may better combine philosophical and sociological methods
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