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  1. Article ; Online: Ethical preparedness and developments in genomic healthcare.

    Farsides, Bobbie / Lucassen, Anneke M

    Journal of medical ethics

    2023  

    Abstract: Considerations of the notion of preparedness have come to the fore in the recent pandemic, highlighting a need to be better prepared to deal with sudden, unexpected and unwanted events. However, the concept of preparedness is also important in relation ... ...

    Abstract Considerations of the notion of preparedness have come to the fore in the recent pandemic, highlighting a need to be better prepared to deal with sudden, unexpected and unwanted events. However, the concept of preparedness is also important in relation to planned for and desired interventions resulting from healthcare innovations. We describe ethical preparedness as a necessary component for the successful delivery of novel healthcare innovations, and use recent advances in genomic healthcare as an example. We suggest that practitioners and organisations charged with delivering innovative and ambitious healthcare programmes can only succeed if they are able to exhibit the attribute of ethical preparedness.
    Language English
    Publishing date 2023-06-02
    Publishing country England
    Document type Journal Article
    ZDB-ID 194927-5
    ISSN 1473-4257 ; 0306-6800
    ISSN (online) 1473-4257
    ISSN 0306-6800
    DOI 10.1136/jme-2022-108528
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Commentary 2: Always be Prepared: Anticipating and Confronting Ethical Challenges in the Research Setting.

    Farsides, Bobbie

    Journal of empirical research on human research ethics : JERHRE

    2019  Volume 14, Issue 5, Page(s) 516–518

    MeSH term(s) Ethics, Research ; Humans ; Morals
    Language English
    Publishing date 2019-11-01
    Publishing country United States
    Document type Journal Article ; Comment
    ZDB-ID 2263068-5
    ISSN 1556-2654 ; 1556-2646
    ISSN (online) 1556-2654
    ISSN 1556-2646
    DOI 10.1177/1556264619835709b
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Commentary: Palliative care and assisted dying are not mutually exclusive.

    Farsides, Bobbie

    BMJ (Clinical research ed.)

    2018  Volume 360, Page(s) k544

    Language English
    Publishing date 2018--07
    Publishing country England
    Document type Journal Article
    ZDB-ID 1362901-3
    ISSN 1756-1833 ; 0959-8154 ; 0959-8146 ; 0959-8138 ; 0959-535X ; 1759-2151
    ISSN (online) 1756-1833
    ISSN 0959-8154 ; 0959-8146 ; 0959-8138 ; 0959-535X ; 1759-2151
    DOI 10.1136/bmj.k544
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Writing the worlds of genomic medicine: experiences of using participatory-writing to understand life with rare conditions.

    Gorman, Richard / Farsides, Bobbie

    Medical humanities

    2022  Volume 48, Issue 2, Page(s) e4

    Abstract: The diagnostic and treatment possibilities made possible by the development and subsequent mainstreaming of clinical genomics services have the potential to profoundly change the experiences of families affected by rare genetic conditions. Understanding ... ...

    Abstract The diagnostic and treatment possibilities made possible by the development and subsequent mainstreaming of clinical genomics services have the potential to profoundly change the experiences of families affected by rare genetic conditions. Understanding the potentials of genomic medicine requires that we consider the perspectives of those who engage with such services; there are substantial social implications involved. There are increasing calls to think more creatively, and draw on more participatory approaches, in evoking rich accounts of lived experience. In this article, we discuss our rationale for, and experiences of, using 'participatory-writing' to understand the diverse, variable and multilayered everyday lives of families and how these correspond with the emerging, rapidly changing and complex field of genomic medicine. Participatory-writing has many benefits as a method for social inquiry. Writing can be expressive and self-revelatory, providing insight into personal and sensitive topics. Writing together produces new conversations and relationships. Pieces written by participants have the potential to affect readers, evoking and enlivening research and prompting professional change. Working with a writing tutor, we organised a participatory-writing programme for families touched by genetic conditions. This involved a series of workshops with an emphasis on building confidence in expressing lived experience through experimenting with different writing techniques. Afterwards we arranged reflective interviews with participants. We drew on dialogical narrative analysis to engage with participants' written pieces, and highlight what everyday life is like for the people who live with, and care for, those with genetic conditions. The stories produced through our writing-groups unfold the implications of new genomic technologies, illuminating how genomics acts to (and likewise, fails to) reconfigure aspects of people's lives outside of the clinic, while simultaneously existing as a sociotechnical frame that can eclipse the wider contexts, challenges and liveliness of life with rare genetic conditions.
    MeSH term(s) Delivery of Health Care ; Emotions ; Genomic Medicine ; Humans ; Writing
    Language English
    Publishing date 2022-04-13
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2018219-3
    ISSN 1473-4265 ; 1468-215X
    ISSN (online) 1473-4265
    ISSN 1468-215X
    DOI 10.1136/medhum-2021-012346
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 5257: Show issues Location:
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  5. Article ; Online: Crafting representations of rare disease: collage as qualitative inquiry.

    Gorman, Richard / Farsides, Bobbie / Bonner, Maria

    Arts & health

    2023  , Page(s) 1–18

    Abstract: Background: Collage is a modality of expression which involves repurposing and juxtaposing fragments. Our aim was to explore both how and what collage, as an arts-based research method, might contribute to enlivening understandings of the experiences of ...

    Abstract Background: Collage is a modality of expression which involves repurposing and juxtaposing fragments. Our aim was to explore both how and what collage, as an arts-based research method, might contribute to enlivening understandings of the experiences of families affected by rare conditions.
    Methods: During 10 weeks of collaging workshops participants created artistic representations of their experiences. The methodology produced a convivial atmosphere where participants talked openly about everyday challenges.
    Results: The collages and conversations produced offer a means through which to consider the complex and multiple positions which families affected by rare disease interpolate. Particularly, the collages prompt cross-cutting thematic reflections on motherhood and care, the challenges of being heard, and balancing family life alongside medicalisation.
    Conclusions: The opportunity to convey topics and feelings through a medium which was both tentatively open yet conceptually complex allowed the broaching of sensitive and elusive themes in a safe, expressive, and non-threatening manner.
    Language English
    Publishing date 2023-09-11
    Publishing country England
    Document type Journal Article
    ZDB-ID 2487722-0
    ISSN 1753-3023 ; 1753-3015
    ISSN (online) 1753-3023
    ISSN 1753-3015
    DOI 10.1080/17533015.2023.2254328
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article ; Online: Imagining genomic medicine futures in primary care: General practitioners' views on mainstreaming genomics in the National Health Service.

    Mwale, Shadreck / Farsides, Bobbie

    Sociology of health & illness

    2021  Volume 43, Issue 9, Page(s) 2121–2140

    Abstract: Genomic medicine has captured the imaginations of policymakers and medical scientists keen to harness its health and economic potentials. In 2012, the UK government launched the 100,000 Genomes Project to sequence the genomes of British National Health ... ...

    Abstract Genomic medicine has captured the imaginations of policymakers and medical scientists keen to harness its health and economic potentials. In 2012, the UK government launched the 100,000 Genomes Project to sequence the genomes of British National Health Service (NHS) patients, laying the ground for mainstreaming genomic medicine in the NHS and developing the UK's genomics industry. However, the recent research and reports from national bodies monitoring genomic medicine's roll-out suggest both ethical and practical challenges for health-care professionals. Against this backdrop, this paper, drawing on qualitative research interviews with general practitioners (GPs) and documentary analysis of policy, explores GPs' views on mainstreaming genomic medicine in the NHS and implications for their practice. Analysing the NHS's genomic medicine agenda as a 'sociotechnical imaginary', we demonstrate that whilst sociotechnical imaginaries are construed as collectively shared understandings of the future, official visions of genomic medicine diverge from those at the forefront of health-care service delivery. Whilst policy discourse evokes hope and transformation of health care, some GPs see technology in formation, an unattainable 'utopia', with no relevance to their everyday clinical practice. Finding space for genomics requires bridging the gap between 'work as imagined' at the policy level and 'work as done' in health-care delivery.
    MeSH term(s) Attitude of Health Personnel ; General Practitioners ; Genomic Medicine ; Genomics ; Humans ; Primary Health Care ; Qualitative Research ; State Medicine
    Language English
    Publishing date 2021-11-13
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 795552-2
    ISSN 1467-9566 ; 0141-9889
    ISSN (online) 1467-9566
    ISSN 0141-9889
    DOI 10.1111/1467-9566.13384
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article: The ethical challenges of personalized digital health.

    Maeckelberghe, Els / Zdunek, Kinga / Marceglia, Sara / Farsides, Bobbie / Rigby, Michael

    Frontiers in medicine

    2023  Volume 10, Page(s) 1123863

    Abstract: Personalized digital health systems (pHealth) bring together in sharp juxtaposition very different yet hopefully complementary moral principles in the shared objectives of optimizing health care and the health status of individual citizens while ... ...

    Abstract Personalized digital health systems (pHealth) bring together in sharp juxtaposition very different yet hopefully complementary moral principles in the shared objectives of optimizing health care and the health status of individual citizens while maximizing the application of robust clinical evidence through harnessing powerful and often complex modern data-handling technologies. Principles brought together include respecting the confidentiality of the patient-clinician relationship, the need for controlled information sharing in teamwork and shared care, benefitting from healthcare knowledge obtained from real-world population-level outcomes, and the recognition of different cultures and care settings. This paper outlines the clinical process as enhanced through digital health, reports on the examination of the new issues raised by the computerization of health data, outlines initiatives and policies to balance the harnessing of innovation with control of adverse effects, and emphasizes the importance of the context of use and citizen and user acceptance. The importance of addressing ethical issues throughout the life cycle of design, provision, and use of a pHealth system is explained, and a variety of situation-relevant frameworks are presented to enable a philosophy of responsible innovation, matching the best use of enabling technology with the creation of a culture and context of trustworthiness.
    Language English
    Publishing date 2023-06-19
    Publishing country Switzerland
    Document type Journal Article
    ZDB-ID 2775999-4
    ISSN 2296-858X
    ISSN 2296-858X
    DOI 10.3389/fmed.2023.1123863
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: What is good medical ethics? A very personal response to a difficult question.

    Farsides, Bobbie

    Journal of medical ethics

    2015  Volume 41, Issue 1, Page(s) 52–55

    Abstract: A personal reflection upon a career in medical ethics leads to four conclusions on what makes for 'good medical ethics'. Good medical ethics is practical in approach, philosophically well grounded, cross disciplinary, and while it might not be a ... ...

    Abstract A personal reflection upon a career in medical ethics leads to four conclusions on what makes for 'good medical ethics'. Good medical ethics is practical in approach, philosophically well grounded, cross disciplinary, and while it might not be a necessary feature, the experience of the author suggests that it is the work of 'good people'.
    MeSH term(s) Bioethics ; Ethics, Medical ; Humans ; Morals
    Language English
    Publishing date 2015-01
    Publishing country England
    Document type Journal Article
    ZDB-ID 194927-5
    ISSN 1473-4257 ; 0306-6800
    ISSN (online) 1473-4257
    ISSN 0306-6800
    DOI 10.1136/medethics-2014-102298
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: Public trust and 'ethics review' as a commodity: the case of Genomics England Limited and the UK's 100,000 genomes project.

    Samuel, Gabrielle Natalie / Farsides, Bobbie

    Medicine, health care, and philosophy

    2017  Volume 21, Issue 2, Page(s) 159–168

    Abstract: The UK Chief Medical Officer's 2016 Annual Report, Generation Genome, focused on a vision to fully integrate genomics into all aspects of the UK's National Health Service (NHS). This process of integration, which has now already begun, raises a wide ... ...

    Abstract The UK Chief Medical Officer's 2016 Annual Report, Generation Genome, focused on a vision to fully integrate genomics into all aspects of the UK's National Health Service (NHS). This process of integration, which has now already begun, raises a wide range of social and ethical concerns, many of which were discussed in the final Chapter of the report. This paper explores how the UK's 100,000 Genomes Project (100 kGP)-the catalyst for Generation Genome, and for bringing genomics into the NHS-is negotiating these ethical concerns. The UK's 100 kGP, promoted and delivered by Genomics England Limited (GEL), is an innovative venture aiming to sequence 100,000 genomes from NHS patients who have a rare disease, cancer, or an infectious disease. GEL has emphasised the 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 which moral thinking occurs. Rather, the 'ethical work' conducted (and displayed) by organisations is more strategic, relating to the politics of the organisation and the need to build public confidence. We set out to explore whether GEL's ethical framework was reflective of this critique, and what this tells us more broadly about how genomics is being integrated into the NHS in response to the ethical and social concerns raised in Generation Genome. We do this by drawing on a series of 20 interviews with individuals associated with or working at GEL.
    MeSH term(s) Bioethical Issues ; Community Participation/statistics & numerical data ; England ; Ethics, Research ; Genomics/ethics ; Genomics/statistics & numerical data ; Health Services Research/organization & administration ; Humans ; Public Opinion ; Quality Assurance, Health Care
    Language English
    Publishing date 2017-10-30
    Publishing country Netherlands
    Document type Journal Article
    ZDB-ID 1440052-2
    ISSN 1572-8633 ; 1386-7423
    ISSN (online) 1572-8633
    ISSN 1386-7423
    DOI 10.1007/s11019-017-9810-1
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  10. Article: The UK's 100,000 Genomes Project: manifesting policymakers' expectations.

    Samuel, Gabrielle Natalie / Farsides, Bobbie

    New genetics and society

    2017  Volume 36, Issue 4, Page(s) 336–353

    Abstract: The UK's 100,000 Genomes Project has the aim of sequencing 100,000 genomes from UK National Health Service (NHS) patients while concomitantly transforming clinical care such that whole genome sequencing becomes routine clinical practice in the UK. ... ...

    Abstract The UK's 100,000 Genomes Project has the aim of sequencing 100,000 genomes from UK National Health Service (NHS) patients while concomitantly transforming clinical care such that whole genome sequencing becomes routine clinical practice in the UK. Policymakers claim that the project will revolutionize NHS care. We wished to explore the 100,000 Genomes Project, and in particular, the extent to which policymaker claims have helped or hindered the work of those associated with Genomics England - the company established by the Department of Health to deliver the project. We interviewed 20 individuals linked to, or working for Genomics England. Interviewees had double-edged views about the context within which they were working. On the one hand, policymakers' expectations attached to the venture were considered vacuous "genohype"; on the other hand, they were considered the impetus needed for those trying to advance genomic research into clinical practice. Findings should be considered for future genomes projects.
    Language English
    Publishing date 2017-09-06
    Publishing country England
    Document type Journal Article
    ZDB-ID 1483823-0
    ISSN 1463-6778
    ISSN 1463-6778
    DOI 10.1080/14636778.2017.1370671
    Database MEDical Literature Analysis and Retrieval System OnLINE

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