(Un)blurred lines? Sex, disability, and the dynamic boundaries of mental capacity law

In this article, we consider the approach to decisions regarding capacity and sexual relations in the Court of Protection in England and Wales, and the boundaries drawn through its application of the Mental Capacity Act 2005 (MCA). We discuss recent developments in the law following the UK Supreme Court case A Local Authority v JB [2021] UKSC 52, which recast how capacity in relation to sexual relations ought to be assessed. Noting that this case has been warmly received by some feminist theorists for the centrality it affords to mutual consent, we draw on critical approaches from feminist, Black feminist, and disability scholarship, to call attention to the legal techniques and judicial reasoning in this case and the ways in which this embeds problematic norms and reinforces the marginalisation of disabled people. We call attention to the impoverished notions of equality advanced in the case and the assumptions that this appears to rely upon which obscure the realities and histories of legal intervention in disabled people's lives. We further argue that the approach in sexual relations cases appears to use capacity determinations as a vehicle to supplement gaps left by the criminal law, blurring their distinct rationalities and enabling further opportunities for control. We suggest that important insights can be gained from bringing these critical perspectives into conversation, including unsettling assumptions contained in the judgment and in mental capacity scholarship more broadly, manoeuvring us out of the perceived intractability of legal reasoning in this context, and offering productive ways forward

The Connection-Friction Axis in Devolved Health Policy and Law-Making in the UK: A Case Study of Organ Donation

Abstract: This article explores the dynamics of devolved health policy and law-making in the UK, drawing on a case study of opt-out organ donation reform. Given that health is a significant area of devolved competence, such case studies offer the opportunity to examine both similarities and differences in approach between the four nations in the context of the UK’s evolving constitutional settlement. We argue that there is a need to move away from the characterisation of the devolved health policy-making process as being grounded in a convergence-divergence approach towards one that recognises the connection-friction axis around which such process takes place. To explore this, we present findings from empirical research on opt-out organ donation law reform. This, we suggest, demonstrates that whilst connectedness between government stakeholders, experts and advocacy groups was clearly vital in structuring the policy process, account should also be taken of how law operates not only as a medium for the playing out of political and ideological friction, but also for the achievement of connection to overcome this

The connection-friction axis in devolved health policy and law-making in the UK: A case study of organ donation

This article explores the dynamics of devolved health policy and law-making in the UK, drawing on a case study of opt-out organ donation reform. Given that health is a significant area of devolved competence, such case studies offer the opportunity to examine both similarities and differences in approach between the four nations in the context of the UK's evolving constitutional settlement. We argue that there is a need to move away from the characterisation of the devolved health policy-making process as being grounded in a convergence-divergence approach, towards one that recognises the connection-friction axis around which this process takes place. To explore this, we present findings from empirical research on opt-out organ donation law reform. This, we suggest, demonstrates that whilst connectedness between government stakeholders, experts and advocacy groups was clearly vital in structuring the policy process, account should also be taken of how law operates not only as a medium for the playing out of political and ideological friction, but also for the achievement of connection to overcome this

"Data makes the story come to life:" understanding the ethical and legal implications of Big Data research involving ethnic minority healthcare workers in the United Kingdom-a qualitative study

The aim of UK-REACH (“The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers”) is to understand if, how, and why healthcare workers (HCWs) in the United Kingdom (UK) from ethnic minority groups are at increased risk of poor outcomes from COVID-19. In this article, we present findings from the ethical and legal stream of the study, which undertook qualitative research seeking to understand and address legal, ethical, and social acceptability issues around data protection, privacy, and information governance associated with the linkage of HCWs’ registration data and healthcare data. We interviewed 22 key opinion leaders in healthcare and health research from across the UK in two-to-one semi-structured interviews. Transcripts were coded using qualitative thematic analysis. Participants told us that a significant aspect of Big Data research in public health is varying drivers of mistrust—of the research itself, research staff and funders, and broader concerns of mistrust within participant communities, particularly in the context of COVID-19 and those situated in more marginalised community settings. However, despite the challenges, participants also identified ways in which legally compliant and ethically informed approaches to research can be crafted to mitigate or overcome mistrust and establish greater confidence in Big Data public health research. Overall, our research indicates that a “Big Data Ethics by Design” approach to research in this area can help assure (1) that meaningful community and participant engagement is taking place and that extant challenges are addressed, and (2) that any new challenges or hitherto unknown unknowns can be rapidly and properly considered to ensure potential (but material) harms are identified and minimised where necessary. Our findings indicate such an approach, in turn, will help drive better scientific breakthroughs that translate into medical innovations and effective public health interventions, which benefit the publics studied, including those who are often marginalised in research

The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers (UK-REACH): protocol for a prospective longitudinal cohort study of healthcare and ancillary workers in UK healthcare settings

Introduction: The COVID-19 pandemic has resulted in significant morbidity and mortality and devastated economies globally. Among groups at increased risk are healthcare workers (HCWs) and ethnic minority groups. Emerging evidence suggests that HCWs from ethnic minority groups are at increased risk of adverse COVID-19-related outcomes. To date, there has been no large-scale analysis of these risks in UK HCWs or ancillary workers in healthcare settings, stratified by ethnicity or occupation, and adjusted for confounders. This paper reports the protocol for a prospective longitudinal questionnaire study of UK HCWs, as part of the UK-REACH programme (The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers). Methods and analysis: A baseline questionnaire will be administered to a national cohort of UK HCWs and ancillary workers in healthcare settings, and those registered with UK healthcare regulators, with follow-up questionnaires administered at 4 and 8 months. With consent, questionnaire data will be linked to health records with 25-year follow-up. Univariate associations between ethnicity and clinical COVID-19 outcomes, physical and mental health, and key confounders/explanatory variables will be tested. Multivariable analyses will test for associations between ethnicity and key outcomes adjusted for the confounder/explanatory variables. We will model changes over time by ethnic group, facilitating understanding of absolute and relative risks in different ethnic groups, and generalisability of findings. Ethics and dissemination: The study is approved by Health Research Authority (reference 20/HRA/4718), and carries minimal risk. We aim to manage the small risk of participant distress about questions on sensitive topics by clearly participant information that the questionnaire covers sensitive topics and there is no obligation to answer these or any other questions, and by providing support organisation links. Results will be disseminated with reports to Government and papers submitted to pre-print servers and peer reviewed journals. Trial registration number: ISRCTN11811602; Pre-results