Publications by authors named "Lucy Frith"

This article considers John Harris' work on autonomy, specifically reproductive autonomy, outlined in and developed throughout his career. Harris often used the concept of reproductive autonomy to make the case for liberal approaches to developments in reproductive and genetic technologies. Harris argued that reproductive autonomy should be highly valued, and therefore we need compelling arguments to justify limiting it in anyway.

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Clinical research in intensive care units (ICUs) is essential for improving treatments for critically ill patients. However, invitations to participate in clinical research in this situation pose numerous challenges. Studies are frequently initiated within a narrow time window when patients are often unconscious and unable to consent.

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Background: The success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research.

Objective: This review aims to synthesize the evidence on public involvement and engagement in big data research.

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In this article, using theories of procedural justice and 'slow violence', we consider potential reform of the Human Fertilisation and Embryology Act 1990. Our theoretical discussion is underpinned by findings from the ConnecteDNA project, exploring how people affected by donor conception experience direct-to-consumer genetic testing (DTCGT). The negative impacts of DTCGT, especially shock discoveries about the circumstances of someone's conception in adulthood, are linked to donor anonymity, and how its continued protection is experienced as a barrier to the rights and agency of donor-conceived people.

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Background: At the beginning of the coronavirus (Covid-19) pandemic, many non-Covid healthcare services were suspended. In April 2020, the Department of Health in England mandated that non-Covid services should resume, alongside the continuing pandemic response. This 'resetting' of healthcare services created a unique context in which it became critical to consider how ethical considerations did (and should) underpin decisions about integrating infection control measures into routine healthcare practices.

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The United Kingdom's Abortion Act 1967 has attracted substantial controversy, which has centred not only on the regulation of abortion itself, but also on the extent to which conscientious objection should be permitted. The aim of this study was to examine a range of healthcare professionals' views on conscientious objection and identify the appropriate parameters of conscientious objection to abortion. Gadamer's hermeneutic was utilised to frame this study.

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A distinction can be drawn between healthcare, where compassion is evident, and the functional delivery of health services. Measures to curb the spread of COVID-19, such as personal protective equipment, telehealth, and visiting restrictions created barriers to service delivery and put pressure on healthcare. Through 37 qualitative interviews with NHS senior managers (n = 11), health professionals (n = 26), and 5 focus group discussions with members of the public (n = 26), we explored experiences of the everyday ethical tensions created as services were being re-established following the acute phase of the COVID-19 pandemic in England.

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Research Question: What effect does direct-to-consumer genetic testing (DTCGT) have on information finding and sharing in relation to gamete donor conception?

Design: This study used in-depth qualitative interviews with parents through donor conception, donors, the relatives of donors and donor-conceived people who have used, or considered using, DTCGT. Interviews were conducted between September 2021 and February 2023. Sixty people defined themselves as having been affected by donor conception and DTCGT.

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This paper will take as its starting point the premise that developing translational bioethics is a worthwhile endeavour. I will develop an account of translational bioethics and discuss what implications this would have for the wider discipline of bioethics and argue that this would be a useful development for bioethics. The paper will conduct a form of 'translational meta-bioethics analysis', in the words of Baerøe.

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Introduction: Involving public contributors helps researchers to ensure that public views are taken into consideration when designing and planning research, so that it is person-centred and relevant to the public. This paper will consider public involvement in big data research. Inclusion of different communities is needed to ensure everyone's voice is heard.

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Background: There is an international move towards greater integration of health and social care to cope with the increasing demand on services.. In Scotland, legislation was passed in 2014 to integrate adult health and social care services resulting in the formation of 31 Health and Social Care Partnerships (HSCPs).

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The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic.

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Background: Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom-heard voices, to ensure that a range of voices are heard and that research is meaningful to them.

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The Extended Salford Lung Study (Ext-SLS) is an extension of the Salford Lung Studies (SLS) in asthma and chronic obstructive pulmonary disease (COPD) through retrospective and prospective collection of patient-level electronic health record (EHR) data. We compared the Ext-SLS cohort with the SLS intention-to-treat populations using descriptive analyses to determine if the strengths (e.g.

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Objective: Artificial intelligence (AI) will have a significant impact on healthcare over the coming decade. At the same time, health inequity remains one of the biggest challenges. Primary care is both a driver and a mitigator of health inequities and with AI gaining traction in primary care, there is a need for a holistic understanding of how AI affect health inequities, through the act of providing care and through potential system effects.

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Background: "Data Saves Lives" is a public engagement campaign that highlights the benefits of big data research and aims to establish public trust for this emerging research area.

Objective: This study explores how the hashtag #DataSavesLives is used on Twitter. We focused on the period when the UK government and its agencies adopted #DataSavesLives in an attempt to support their plans to set up a new database holding National Health Service (NHS) users' medical data.

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Objectives: Obtaining informed consent from patients in intensive care units (ICUs) prior to enrolment in a study is practically and ethically complex. Decisions about the participation of critically ill patients in research often involve substitute decision makers (SDMs), such as a patient's relatives or doctors. We explored the perspectives of different stakeholder groups towards these consent procedures.

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Introduction: Covid-19 expanded the use of remote working to engage with public contributors in health and social care research. These changes have the potential to limit the ability to participate in patient and public involvement and engagement (PPIE) for some public contributors. It is therefore important to understand public contributors' preferences, so that remote working can be organized in an optimal way to encourage rather than discourage participation.

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Background: This paper considers remote working in patient public involvement and engagement (PPIE) in health and social care research. With the advent of the Covid-19 pandemic and associated lock-down measures in the UK (from March 2020), PPIE activities switched to using remote methods (e.g.

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Action needs to be taken to map out the fairest way to meet the needs of all NHS stakeholders in the post-pandemic 'new normal'. In this article, we review the NHS Constitution, looking at it from a relational perspective and suggesting that it offers a useful starting point for such a project, but that new ways of thinking are required to accommodate the significant changes the pandemic has made to the fabric of the NHS. These new ways of thinking should encompass concepts of solidarity, care, and (reciprocal) responsibility, grounded in an acceptance of the importance of relationships in society.

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Introduction: COVID-19 has tested the resilience of health systems globally and exposed existing strengths and weaknesses. We sought to understand health systems COVID-19 adaptations and decision making in Liberia and Merseyside, UK.

Methods: We used a people-centred approach to carry out qualitative interviews with 24 health decision-makers at national and county level in Liberia and 42 actors at county and hospital level in the UK (Merseyside).

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