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Determining a role for Patient and Public Involvement and Engagement (PPIE) in genomic data governance for cancer care
Abstract Comprehensive collections of cancer data, including genomic data, are needed to improve cancer risk prediction and treatments. A recent government review, Better, Broader, Safer: Using health data for research and analysis, has argued for high-quality Patient and Public Involvement and Engagement (PPIE) for ethical data use. In this paper we determine a role and justification for PPIE to govern uses of genomic data in fields like cancer. First, we analyse two public attitudes studies about the role of PPIE in genomics governance. Second, we characterise two ethically-significant features of the context of governing genomic data: 1) data aggregation leading to novel group formation, and 2) the hybrid territory of genomic cancer data uses. Thirdly, we bring together these aspects to describe a fully determined role for PPIE within an approach to governing cancer genomic data, which is tailored to major areas of ethical consideration. Our account is a novel interpretation of what PPIE is for in governance, how it may foster public support and how its success in so doing depends on it being tailored to context.
Amendment addresses grooming
Jennifer Roest, research and projects officer at Coram Children's Legal Centre, discusses a proposed amendment aimed at criminalising adults sending sexual messages to children and young people
Tackling child sexual exploitation
Jen Roest research and projects officer at Coram Children's Legal Centre, examines a call to address child sexual exploitation in Manchester through attitudinal change of public agencies and the legal system
Children's voices in proceedings
Jen Roest, Coram Children's Legal Centre's research and project's officer, takes a look at recent developments concerning children's voices being heard within UK family justice proceedings
Misalignments of values and preferences: Finding an ideal elder care arrangement.
The ageing of the global population prompts many countries to appropriately allocate healthcare resources that ensure adequate elder care. Nevertheless, the shortages in and burdens of professional care continue to persist. Assistive and remote monitoring technologies for home-use support professional carers in providing care to older persons. With secondary analyses of semistructured interviews with 27 older persons and 23 professional carers in Switzerland, we examined their reasons and expectations for accepting or rejecting technologies in elder care contextualised by their moral outlooks on care, life, death and the deterioration from age. Whereas some appreciate the opportunities for greater safety and reassurance from technologies, others may see the alerts as burdensome and the interventions superfluous. We argue that dissatisfaction in professional care may result from a misalignment of the subjective values between the carer and older person. This may exacerbate the problem of appropriate care provision and disrupt the potential of technologies to benefit older persons. An ideal caregiving arrangement may be found when their values do align. We argue that there exists intrinsic value to finding an alignment using the capabilities approach, followed by reflections on autonomy and privacy. Recommendations are offered to practically enable this alignment, with limits set to ensure adequate access to care. With the increasing enthusiasm for technical solutions in professional elder care, this paper contributes a novel perspective by presenting two reasons for inefficiencies in reducing care burdens that are linked to the alignment of core moral outlooks and the realisation of capabilities.
Pandemic Ethics From COVID-19 to Disease X
From COVID-19 to Disease X Dominic Wilkinson, Julian Savulescu. Dunham , A. , Rieder , T. , and Hymbryd , C. ( 2020 ) , A bioethical perspective for navigating moral dilemmas amidst the COVID - 19 pandemic , Journal of the American ...
End-of-Life Decisions and the Need for Greater Rigour in the Determination of a Child's Best Interests.
This column discusses the New South Wales Supreme Court decision in H v OL [2024] NSWSC 271. That decision raises a number of issues about how the "best interests" principle is employed in cases where disputes arise about whether life-sustaining treatments should be withheld or withdrawn from children. The column argues that these cases would be better served by adopting the "balance sheet" approach that is employed in England and Wales.
A qualitative comparison of data infrastructures for COVID-19 health-related data: lessons for the European Health Data Space
The COVID-19 pandemic has represented the first global health emergency to be tackled through widespread data collection via a broad array of digital health technologies. Throughout Europe, data infrastructures for the acquisition, processing, and management of COVID-19 data were either implemented ex novo or “repurposed” towards this end. Analysing and comparing these data practices may hold great value to the upcoming European Health Data Space (EHDS) implementation. This study investigates the implementation of COVID-19 data infrastructures in four European countries–Italy, Sweden, Denmark, and England–to highlight challenges related to technical, ethical, and legal aspects of secondary uses of health-related data, particularly given the implementation of the EHDS. The data infrastructures included in the study reveal profound differences in design and data access practices, partly owing to the social contexts in which they were established. Challenges for data-sharing and integration include fragmentation of standards and requirements, ethical concerns about access by corporate actors to publicly collected datasets, and lack of robust legal bases. Investigating such infrastructures is crucial to probe challenges in data sharing practices within the European context and represents a revealing test case to anticipate opportunities and challenges in aligning current technical and legal standards with EHDS’ requirements.