scholarly journals The ethics of genomic medicine: redefining values and norms in the UK and France

2021 ◽  
Author(s):  
Marie Gaille ◽  
◽  
Ruth Horn
Keyword(s):  
Social Contract ◽  
Ethical Issues ◽  
Social Issues ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Public Healthcare ◽  
Individual Rights ◽  
The Social ◽  
The Uk ◽  
The Impact

AbstractThis paper presents a joint position of the UK-France Genomics and Ethics Network (UK-FR GENE), which has been set up to reflect on the ethical and social issues arising from the integration of genomics into routine clinical care in the UK and France. In 2018, the two countries announced enhanced cooperation between their national strategies, Genomics England and Plan France Médecine Génomique 2025, which offers a unique opportunity to study the impact of genomic medicine and relevant policies in different national contexts. The paper provides first insights into the two national strategies and the norms, values and principles at stake in each country. It discusses the impact of genomic medicine on established relationships and existing regulations, and examines its effects on solidarity and trust in public healthcare systems. Finally, it uses the social contract as an analytical lens to explore and redefine the balance between individual rights and collective duties in the context of genomic medicine. This paper leads to three key observations: (1) despite each country’s strategy being at a different stage of implementation, the two countries face similar ethical issues; (2) each country tries to solve these issues by (re-)defining individual rights and collective duties in its own way; (3) the social contract presents a useful tool to analyse the ways the UK and France address the ethical challenges raised by genomics. This overview lays the groundwork for future in-depth comparison, and drive collaborative research, between the UK and France.

scholarly journals Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project

2018 ◽  
Vol 44 (6) ◽  
pp. 397-403 ◽  
Author(s):  
Sandi Dheensa ◽  
Gabrielle Samuel ◽  
Anneke M Lucassen ◽  
Bobbie Farsides
Keyword(s):  
Clinical Practice ◽  
Health Service ◽  
Social Contract ◽  
Ethical Issues ◽  
Clinical Investigation ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Ongoing Research ◽  
Hybrid Nature ◽  
Medicine Service

Clinical practice and research are governed by distinct rules and regulations and have different approaches to, for example, consent and providing results. However, genomics is an example of where research and clinical practice have become codependent. The 100 000 genomes project (100kGP) is a hybrid venture where a person can obtain a clinical investigation only if he or she agrees to also participate in ongoing research—including research by industry and commercial companies. In this paper, which draws on 20 interviews with professional stakeholders involved in 100kGP, we investigate the ethical issues raised by this project’s hybrid nature. While some interviewees thought the hybrid nature of 100kGP was its vanguard, interviewees identified several tensions around hybrid practice: how to decide who should be able to participate; how to determine whether offering results might unduly influence participation into wide-ranging but often as yet unknown research and how to ensure that patients/families do not develop false expectations about receiving results. These areas require further debate as 100kGP moves into routine healthcare in the form of the national genomic medicine service. To address the tensions identified, we explore the appropriateness of Faden et al.’s framework of ethical obligations for when research and clinical care are completely integrated. We also argue that enabling ongoing transparent and trustworthy communication between patients/families and professionals around the kinds of research that should be permitted in 100kGP will help to understand and ensure that expectations remain realistic. Our paper aims to encourage a focused discussion about these issues and to inform a new ‘social contract’ for research and clinical care in the health service.

The Impact of Covid 19 on Pregnant Women and Child Health

2020 ◽  
Vol 11 (SPL1) ◽  
pp. 1367-1373
Author(s):  
Nikhil Sanjay Mujbaile ◽  
Smita Damke
Keyword(s):  
Social Issues ◽  
Middle Income ◽  
Web Based ◽  
Middle Income Countries ◽  
Low Middle Income Countries ◽  
The Social ◽  
Social Separation ◽  
The Impact ◽  
And Child Health ◽  
General Wellbeing

The Covid illness (COVID-19) pandemic has spread rapidly all through the world and has had a drawn-out impact. The Pandemic has done incredible damage to society and made genuine mental injury to numerous individuals. Mental emergencies frequently cause youngsters to deliver sentiments of relinquishment, despondency, insufficiency, and fatigue and even raise the danger of self-destruction. Youngsters with psychological instabilities are particularly powerless during the isolate and colonial removing period. Convenient and proper assurances are expected to forestall the event of mental and social issues. The rising advanced applications and wellbeing administrations, for example, telehealth, web-based media, versatile wellbeing, and far off intuitive online instruction can connect the social separation and backing mental and conduct wellbeing for youngsters. Because of the mental advancement qualities of youngsters, this investigation additionally outlines intercessions on the mental effect of the COVID-19 Pandemic. Further difficulties in Low Middle-Income Countries incorporate the failure to actualize successful general wellbeing estimates, for example, social separating, hand cleanliness, definitive distinguishing proof of contaminated individuals with self-disconnection and widespread utilization of covers The aberrant impacts of the Pandemic on youngster wellbeing are of extensive concern, including expanding neediness levels, upset tutoring, absence of admittance to the class taking care of plans, decreased admittance to wellbeing offices and breaks in inoculation and other kid wellbeing programs. Kept tutoring is critical for kids in Low Middle-Income Countries. Arrangement of safe situations is mainly testing in packed asset obliged schools. 

scholarly journals Ethical Issues in Consent for the Reuse of Data in Health Data Platforms

2021 ◽  
Vol 27 (1) ◽  
Author(s):  
Alex McKeown ◽  
Miranda Mourby ◽  
Paul Harrison ◽  
Sophie Walker ◽  
Mark Sheehan ◽  
...  
Keyword(s):  
Social Contract ◽  
Ethical Issues ◽  
Personalised Medicine ◽  
Data Reuse ◽  
Remote Access ◽  
Risk Indicators ◽  
New Paradigm ◽  
The Social ◽  
New Thinking ◽  
The Relationship

AbstractData platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of ‘reasonable expectations’ for the reuse of data; Waldron’s account of ‘integrity’ as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests.

scholarly journals Three models for the regulation of polygenic scores in reproduction

2021 ◽  
pp. medethics-2020-106588
Author(s):  
Sarah Munday ◽  
Julian Savulescu
Keyword(s):  
Human Genetics ◽  
Ethical Issues ◽  
Well Being ◽  
Embryo Selection ◽  
Risk Scores ◽  
Regulatory Regime ◽  
Polygenic Scores ◽  
The Usa ◽  
The Uk ◽  
The Impact

The past few years have brought significant breakthroughs in understanding human genetics. This knowledge has been used to develop ‘polygenic scores’ (or ‘polygenic risk scores’) which provide probabilistic information about the development of polygenic conditions such as diabetes or schizophrenia. They are already being used in reproduction to select for embryos at lower risk of developing disease. Currently, the use of polygenic scores for embryo selection is subject to existing regulations concerning embryo testing and selection. Existing regulatory approaches include ‘disease-based' models which limit embryo selection to avoiding disease characteristics (employed in various formats in Australia, the UK, Italy, Switzerland and France, among others), and 'laissez-faire' or 'libertarian' models, under which embryo testing and selection remain unregulated (as in the USA). We introduce a novel 'Welfarist Model' which limits embryo selection according to the impact of the predicted trait on well-being. We compare the strengths and weaknesses of each model as a way of regulating polygenic scores. Polygenic scores create the potential for existing embryo selection technologies to be used to select for a wider range of predicted genetically influenced characteristics including continuous traits. Indeed, polygenic scores exist to predict future intelligence, and there have been suggestions that they will be used to make predictions within the normal range in the USA in embryo selection. We examine how these three models would apply to the prediction of non-disease traits such as intelligence. The genetics of intelligence remains controversial both scientifically and ethically. This paper does not attempt to resolve these issues. However, as with many biomedical advances, an effective regulatory regime must be in place as soon as the technology is available. If there is no regulation in place, then the market effectively decides ethical issues.

scholarly journals Migration infrastructures and the production of migrants’ irregularity in Japan and the United Kingdom

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Nando Sigona ◽  
Jotaro Kato ◽  
Irina Kuznetsova
Keyword(s):  
Legal Status ◽  
Qualitative Interviews ◽  
Legal Violence ◽  
The United Kingdom ◽  
The Social ◽  
Access And Quality ◽  
The Uk ◽  
The Impact

AbstractThe article examines the migration infrastructures and pathways through which migrants move into, through and out of irregular status in Japan and the UK and how these infrastructures uniquely shape their migrant experiences of irregularity at key stages of their migration projects.Our analysis brings together two bodies of migration scholarship, namely critical work on the social and legal production of illegality and the impact of legal violence on the lives of immigrants with precarious legal status, and on the role of migration infrastructures in shaping mobility pathways.Drawing upon in-depth qualitative interviews with irregular and precarious migrants in Japan and the UK collected over a ten-year period, this article develops a three-pronged analysis of the infrastructures of irregularity, focusing on infrastructures of entry, settlement and exit, casting a comparative light on the mechanisms that produce precarious and expendable migrant lives in relation to access to labour and labour conditions, access and quality of housing and law enforcement, and how migrants adapt, cope, resist or eventually are overpowered by them.

Test genetici e consenso informato

2012 ◽  
pp. 68-95
Author(s):  
Marco Seri ◽  
Claudio Graziano ◽  
Daniela Turchetti ◽  
Juri Monducci
Keyword(s):  
Dna Sequencing ◽  
Human Genetics ◽  
Ethical Issues ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Genome Project ◽  
Ethical Challenges ◽  
Sequencing Technologies ◽  
The Human Genome Project

The pace of discovery in the field of human genetics has increased exponentially in the last 30 years. We have witnessed the completion of the Human Genome Project, the identification of hundreds of disease-causing genes, and the dawn of genomic medicine (clinical care based on genomic information). Reduction of DNA sequencing costs, thanks to the so-called "next generation sequencing" technologies, is driving a shift towards the era of "personal genomes", but scientific as well as ethical challenges ahead are countless. We provide an overview on the classification of genetic tests, on informed consent procedures in the context of genetic counseling, and on specific ethical issues raised by the implementation of new DNA sequencing technologies.

scholarly journals How Oil Contracts Affect Human Rights

2018 ◽  
Vol 3 (4) ◽  
pp. 30
Author(s):  
Maria João Mimoso ◽  
Clara da Conceição de Sousa Alves ◽  
Diogo Filipe Dias Gonçalves
Keyword(s):  
Human Rights ◽  
Oil And Gas ◽  
Social Issues ◽  
Oil And Gas Industry ◽  
Gas Industry ◽  
Oil Companies ◽  
The Social ◽  
Oil Contracts ◽  
The 19Th Century ◽  
The Impact

Since the beginning of the 19th century, we have assisted major proliferation of the oil and gas industry. This phenomenon of exponential growth is due to the fact that oil companies hold the world’s oil monopoly on the extraction, processing and commercialization. Therefore, as being one of the most influential sectors in the world, is crucial to strictly regulate how oil and gas contracts concerns the potential environmental and social impacts arising from the conduct of petroleum operations and how such behavior affects the human rights. As a matter of fact, the social issues field is an emerging area, and despite such importance, oil contracts do not often deal with them in great detail, corresponding to an actual emptiness of the human rights provisions. In terms of responsibly, oil companies, have an inalienable obligation to ensure that their actions do not violate human rights or contribute for their violation. This study aims to trace a detailed analysis of the impact of the oil and gas agreements in human rights. In order to fully comprehend the deep effects of this industry, we will examine, in detail, numerous of published oil and gas agreements, as well as, decode which are the real standards and practices accepted by this industry. We will use a deductive and speculative reasoning. We will try to demonstrate how incipient and short protection is given to human rights and what responsible conducts must urgently be developed.

scholarly journals The perception of biopsychosocial impacts of COVID-19 during lockdown restrictions over time in the UK – a mixed methods study

2021 ◽  
Vol 4 (Special2) ◽  
pp. 402-414
Author(s):  
Samuel Grimwood ◽  
Kaz Stuart ◽  
Ruth Browning ◽  
Elaine Bidmead ◽  
Thea Winn-Reed
Keyword(s):  
Social Issues ◽  
Negative Impact ◽  
Mixed Methods Study ◽  
Biological Domain ◽  
Data Points ◽  
Integrated Recovery ◽  
Biopsychosocial Health ◽  
The Uk ◽  
The Impact ◽  
Over Time

Background: The COVID-19 pandemic has profoundly impacted the health of individuals physically, mentally, and socially. This study aims to gain a deeper understanding of this impact across the pandemic from a biopsychosocial stance. Methods: A survey created by the research team was employed between November 2020 and February 2021 across social media, relevant organizations, and networks. The survey incorporated 5-time points across the different stages of the pandemic, covering biological, psychological, and social. There were 5 items for each survey (Very Positive affect to Very Negative affect), and analysis was undertaken using SPSS version 16. Descriptive statistics and non-parametric Friedman and Wilcoxon Tests, as well as correlations between the three domains, were implemented. Results: This study included 164 participants (77.0% female and 35.0% male) across 24 out of 38 counties in the UK. The impact of COVID-19 on biological domain was significant across the five data points χ2(4) = 63.99, p < 0.001, psychological χ2(4) = 118.939, p <0.001 and socially χ2(4) = 186.43, p <0.001. Between the 5 data points, 4 out of 5 had a negative impact, however between the first stage of lockdown and the easing of restrictions, findings for biological (Z=-2.35, p <0.05), psychological (Z=-6.61, p < 0.001), and socially (Z = -8.61, p <0.001) were positive. Negative correlations between the three domains across the pandemic are apparent, but in later stages, the biological domain had a positive correlation r = 0.52, p < 0.001. Conclusion: The data shows a negative impact from the self-reported perception of wellbeing from a biopsychosocial stance over time, as well as perceiving the three domains to interact negatively. To address these biopsychosocial issues, the research implies a place-based integrated recovery effort is needed, addressing biological, psychological, and social issues simultaneously. Further research should investigate biopsychosocial health among a more generalizable population.

scholarly journals The Social Practices of Food Bank Volunteer Work

2021 ◽  
pp. 1-18
Author(s):  
Richard Philip Lee ◽  
Caroline Coulson ◽  
Kate Hackett
Keyword(s):  
Social Practice ◽  
Food Aid ◽  
Future Research ◽  
Food Bank ◽  
Health Crisis ◽  
Public Health Crisis ◽  
The Social ◽  
Practice Approach ◽  
The Uk ◽  
The Impact

The on-going rise in demand experienced by voluntary and community organisations (VCOs) providing emergency food aid has been described as a sign of a social and public health crisis in the UK (Loopstra, 2018; Lambie-Mumford, 2019), compounded since 2020 by the impact of (and responses to) Covid 19 (Power et al., 2020). In this article we adopted a social practice approach to understanding the work of food bank volunteering. We identify how ‘helping others’, ‘deploying coping strategies’ and ‘creating atmospheres’ are key specific (and connected) forms of shared social practice. Further, these practices are sometimes suffused by faith-based practice. The analysis offers insights into how such spaces of care and encounter (Williams et al., 2016; Cloke et al., 2017) function, considers the implications for these distinctive organisational forms (the growth of which has been subject to justified critique) and suggests avenues for future research.

scholarly journals Pain Assessment: Subjectivity, Objectivity, and the Use of Neurotechnology Part One: Practical and Ethical Issues

2010 ◽  
Vol 4;13 (4;7) ◽  
pp. 305-315 ◽  
Author(s):  
James Giordano
Keyword(s):  
Pain Assessment ◽  
Subjective Experience ◽  
Ethical Issues ◽  
Social Issues ◽  
Clinical Care ◽  
Pain Syndrome ◽  
Objective Evaluation ◽  
Pain Patient ◽  
Key Words Pain ◽  
The Right

The pain clinician is confronted with the formidable task of objectifying the subjective phenomenon of pain so as to determine the right treatments for both the pain syndrome and the patient in whom the pathology is expressed. However, the experience of pain — and its expression — remains enigmatic. Can currently available evaluative tools, questionnaires, and scales actually provide adequately objective information about the experiential dimensions of pain? Can, or will, current and future iterations of biotechnology — whether used singularly or in combination (with other technologies as well as observational-behavioral methods) — afford objective validation of pain? And what of the clinical, ethical, legal and social issues that arise in and from the use — and potential misuse — of these approaches? Subsequent trajectories of clinical care depend upon the findings gained through the use of these techniques and their inappropriate employment – or misinterpretation of the results they provide — can lead to misdiagnoses and incorrect treatment. This essay is the first of a two-part series that explicates how the intellectual tasks of knowing about pain and the assessment of its experience and expression in the pain patient are constituent to the moral responsibility of pain medicine. Herein, we discuss the problem of pain and its expression, and those methods, techniques, and technologies available to bridge the gap between subjective experience and objective evaluation. We address how these assessment approaches are fundamental to apprehend both pain as an objective, neurological event, and its impact upon the subjective experience, existence, and expectations of the person in pain. In this way, we argue that the right use of technology — together with inter-subjectivity, compassion, and insight — can sustain the good of pain care as both a therapeutic and moral enterprise. Key words: pain, assessment, neurotechnology, biotechnology, neuroethics, medicine

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