scholarly journals Aspectos éticos de los bancos de datos de DNA de interés policial

Bioderecho.es ◽  
2021 ◽  
Author(s):  
Francesc Mestres Naval ◽  
Cinta Pegueroles Queralt ◽  
Josep Vives-Rego
Keyword(s):  
Ethical Issues ◽  
Crime Scene ◽  
Ethnic Origin ◽  
Entire Population ◽  
Genetic Profile ◽  
Investigative Tool ◽  
The Uk ◽  
Genetic Profiles

El primer banco de datos policial basado en perfiles genéticos de DNA se introdujo en el Reino Unido en 1995. La identificación de posibles sospechosos se realiza por la comparación directa de un perfil genético recuperado del lugar de los hechos con otro almacenado en un banco de datos. Desde un principio se ha demostrado que dichos bancos de DNA son una herramienta de investigación policial poderosa, pero que presenta diversos problemas éticos. Posteriormente se fue más allá buscando coincidencias parciales, que podrían indicar un vínculo familiar entre un perfil genético almacenado y otro obtenido en el lugar de los hechos. Este procedimiento genera un elevado número de sospechosos potenciales entre personas ajenas al caso que se investiga. Recientemente la búsqueda policial basada en el DNA ha penetrado en bancos de datos de interés no criminal, sino destinados a estimar el origen étnico de personas o descubrir familiares lejanos. Este tipo de búsquedas ha suscitado la posibilidad de generar un banco de datos universal de DNA, donde toda la población estuviese incluida. Estos y otros aspectos bioéticos respecto a la información basada en el DNA y a su acceso son tratados en el presente artículo.  The first police databank based on DNA genetic profiles was introduced in the UK in 1995. Identification of potential suspects is carried out by direct comparison of a genetic profile retrieved from the crime scene with another stored in a databank. DNA databanks have been proven from the outset to be a powerful police investigative tool, but they present a number of ethical issues. Later, it went further looking for partial coincidences, which could indicate a family link between a stored genetic profile and one obtained at the crime scene. This procedure generates a high number of potential suspects among people not related with the case under investigation. Recently, the DNA-based police search has penetrated databanks of non-criminal interest, but aimed at estimating the ethnic origin of people or discovering distant relatives. This type of search has raised the possibility of generating a universal DNA databank, where the entire population were included. These and other bioethical aspects regarding information based on DNA and its access are dealt with in this article.  

‘Who Ya Gonna Call …?’ Ethical and legal dilemmas in specialist children centres and district general hospitals

2021 ◽  
pp. 147775092110366
Author(s):  
Harika Avula ◽  
Mariana Dittborn ◽  
Joe Brierley
Keyword(s):  
Intensive Care ◽  
Clinical Ethics ◽  
Ethical Issues ◽  
General Setting ◽  
Daily Practice ◽  
Paediatric Intensive Care ◽  
Ethical Challenges ◽  
Legal Cases ◽  
Ethics Support ◽  
The Uk

The field of Paediatric Bioethics, or ethical issues applied to children's healthcare, is relatively new but has recently gained an increased professional and public profile. Clinical ethics support to health professionals and patients who face ethical challenges in clinical practice varies between and within institutions. Literature regarding services available to paediatricians is sparse in specialist tertiary centres and almost absent in general paediatrics. We performed a mixed-methods study using online surveys and focus groups to explore the experiences of ethical and legal dilemmas and the support structures available to (i) paediatric intensive care teams as a proxy for specialist children's centres and (ii) paediatricians working in the general setting in the UK. Our main findings illustrate the broad range of ethical and legal challenges experienced by both groups in daily practice. Ethics training and the availability of ethics support were variable in structure, processes, funding and availability, e.g., 70% of paediatric intensive care consultants reported access to formal ethics advice versus 20% general paediatricians. Overall, our findings suggest a need for ethics support and training in both settings. The broad experience reported of ethics support, where it existed, was good – though improvements were suggested. Many clinicians were concerned about their relationship with children and families experiencing a challenging ethical situation, partly as a result of high-profile recent legal cases in the media. Further research in this area would help collect a broader range of views to inform clinical ethics support's development to better support paediatric teams, children and their families.

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 Mandating doctors to attend counter-terrorism workshops is medically unethical

2016 ◽  
Vol 40 (2) ◽  
pp. 87-88 ◽  
Author(s):  
Derek Summerfield
Keyword(s):  
Medical Association ◽  
Ethical Leadership ◽  
Ethical Issues ◽  
Civil Liberties ◽  
General Medical Council ◽  
British Medical Association ◽  
Medical Council ◽  
Counter Terrorism ◽  
Mandatory Training ◽  
The Uk

SummaryThis is a brief exploration of the ethical issues raised for psychiatrists, and for universities, schools and wider society, by the demand that they attend mandatory training as part of the UK government's Prevent counter-terrorism strategy. The silence on this matter to date on the part of the General Medical Council, medical Royal Colleges, and the British Medical Association is a failure of ethical leadership. There is also a civil liberties issue, reminiscent of the McCarthyism of 1950s USA. We should refuse to attend.

‘The NDNAD Has No Ability in Itself to be Discriminatory’: Ethnicity and the Governance of the UK National DNA Database

Sociology ◽  
2013 ◽  
Vol 47 (5) ◽  
pp. 976-992 ◽  
Author(s):  
David Skinner
Keyword(s):  
Black People ◽  
Crime Scene ◽  
Institutional Racism ◽  
Use Of Data ◽  
Dna Database ◽  
The Uk ◽  
Dna Profiles ◽  
Political Governance ◽  
Ethnic Appearance

This article explores the place of ‘ethnicity’ in the operation, management and contestation of the UK National DNA Database (NDNAD). In doing so, it examines the limitations of bioethics as a response to political questions raised by the new genetics. The UK police forensic database has been racialised in a number of distinct ways: in the over-representation of black people in the database population; in the classification of all DNA profiles according to ‘ethnic appearance’; in the use of data for experiments to determine the ethnicity of crime scene DNA; and in the focus on ethnicity in public debate about the database. This racialisation presented potential problems of legitimacy for the NDNAD but, as the article shows, these have been partly neutralised through systems of ethico-political governance. In these systems of governance discussion of institutional racism has been postponed or displaced by other ways of talking about ethnicity and identity.

Thinking about Religious Welfare and Rethinking Social Policy in the British Context

2012 ◽  
Vol 11 (4) ◽  
pp. 613-624 ◽  
Author(s):  
Rana Jawad
Keyword(s):  
Social Policy ◽  
Social Welfare ◽  
Social Action ◽  
Ethical Issues ◽  
Welfare Provision ◽  
Challenges And Opportunities ◽  
The Uk ◽  
Role Of Religion ◽  
Ways Of Being

The role of religion in social welfare provision, and more broadly in shaping the development of state social policy in the UK, has become an issue of increasing prominence in the last decade raising both new challenges and opportunities. This article brings together new and existing research in the field of religion and social action/welfare in the British context to present a preliminary discussion of how and why religion, as a source of social identity and moral values, matters for social policy. The key argument is that religious welfare provision goes beyond the mixed economy of welfare paradigm and has the capacity to challenge the Utilitarian underpinnings of mainstream social policy thinking by giving more relative importance to ethical issues such as self-knowledge and morality, in addition to the more conventional concepts of wellbeing or happiness. The article proposes the concept of ways of being in order to bring together these moral ideational factors that underpin social welfare.

scholarly journals From Warnock to the Stem Cell Bank—Evaluating the UK's Regulatory Measures for Stem Cell Research

2005 ◽  
Vol 2 (1) ◽  
pp. 1-14 ◽  
Author(s):  
Richard Twine
Keyword(s):  
Stem Cell ◽  
Stem Cell Research ◽  
Ethical Issues ◽  
Cell Bank ◽  
The United Kingdom ◽  
Institutional Learning ◽  
Regulatory Measures ◽  
United Kingdom Government ◽  
The Uk ◽  
Made In

AbstractThe United Kingdom government regards its regulations for stem cell research as some of the most rigorous in the world. This paper chronologically outlines the important stages in the evolution of these regulatory measures over the past twenty years, including the Warnock Report, the Human Fertilisation and Embryology Act 1990, the subsequent series of reports and consultations, and the establishment of the UK stem cell bank. Attending both to the discursive framing of stem cell research and the ethical issues faced, an assessment is made in terms of the appropriateness, adequacy and effectiveness of the UK's regulatory measures. Although institutional learning is detected in areas such as improving public engagement, the UK regulatory process has been open to the accusation of a scientific community regulating itself. This paper recommends that in order to avoid any possible complacency further improvements in public inclusiveness and interdisciplinary representation on regulatory committees should be sought.

scholarly journals The public accountability of social platforms: lessons from a study on bots and trolls in the Brexit campaign

2018 ◽  
Vol 376 (2128) ◽  
pp. 20180003 ◽  
Author(s):  
Marco Bastos ◽  
Dan Mercea
Keyword(s):  
Social Media ◽  
Large Scale ◽  
Ethical Issues ◽  
Lessons Learned ◽  
Information Warfare ◽  
The Public ◽  
Social Media Platforms ◽  
Application Programming ◽  
Access To Data ◽  
The Uk

In this article, we review our study of 13 493 bot-like Twitter accounts that tweeted during the UK European Union membership referendum debate and disappeared from the platform after the ballot. We discuss the methodological challenges and lessons learned from a study that emerged in a period of increasing weaponization of social media and mounting concerns about information warfare. We address the challenges and shortcomings involved in bot detection, the extent to which disinformation campaigns on social media are effective, valid metrics for user exposure, activation and engagement in the context of disinformation campaigns, unsupervised and supervised posting protocols, along with infrastructure and ethical issues associated with social sciences research based on large-scale social media data. We argue for improving researchers' access to data associated with contentious issues and suggest that social media platforms should offer public application programming interfaces to allow researchers access to content generated on their networks. We conclude with reflections on the relevance of this research agenda to public policy. This article is part of a discussion meeting issue ‘The growing ubiquity of algorithms in society: implications, impacts and innovations'.

Abstract 13296: Risk Loci of Hypertrophic Cardiomyopathy Identified via the UK Biobank

Circulation ◽  
2020 ◽  
Vol 142 (Suppl_3) ◽  
Author(s):  
Alex Gyftopoulos ◽  
Yi-Ju Chen ◽  
Libin Wang ◽  
Charles H Williams ◽  
Young Wook Chun ◽  
...  
Keyword(s):  
Hypertrophic Cardiomyopathy ◽  
Large Population ◽  
Phenotypic Expression ◽  
Coiled Coil ◽  
Intraflagellar Transport ◽  
Genetic Profile ◽  
Uk Biobank ◽  
Disease Manifestation ◽  
Pathogenic Variants ◽  
The Uk

Introduction: Hypertrophic cardiomyopathy (HCM) is the most commonly inherited cardiac disease affecting 1:500 to 1:200 individuals worldwide. HCM has a heterogeneous genetic profile and phenotypic expression. More than 1400 known pathogenic variants have been identified in 11 sarcomere genes. In about 40% of HCM patients, the genetic cause may not be identified. The same mutation may lead to different phenotypes and severity in different individuals. Identification of novel HCM genes and modifiers will expand our understanding of the signaling pathways that are responsible for phenotypic expression of HCM. Methods: The UK Biobank comprises clinical and genetic data for greater than 500,000 individuals. We used OASIS, an information system for analyzing, searching, and visualizing associations between phenotype and genotype data to analyze this data. We compared control individuals to HCM individuals identified by ICD-10 code (I42.1 and I42.2) in a 20-to-1 fashion. Related individuals and those with confounding diagnoses were excluded. Results: The analysis was performed with Plink’s GLM option, and we identified 84 variants with a minor allele frequency of 0.5% or greater in 65 genes associated with HCM with a p < 1x10 -6 , including 4 with p < 5x10 -8 . The identified genes encode lncRNAs, miRNAs, and membrane proteins. Variants with high significance were identified in the genes encoding putative ciliary components DNAL4 (dynein axonemal light chain 4; p = 2.9x10 -8 ), MYO1D (unconventional myosin 1D; p = 3.1x10 -8 ), ITFAP (intraflagellar transport associated protein; p = 9.5x10 -8 ), CABCOCO1 (ciliary associated calcium biding coiled-coil 1; p = 3.7x 10 -7 ), EVL (Enah-Vasp-like; p = 4.4x 10 -7 ) and IFT122 (intraflagellar transport 122; p = 8.0 x10 -7 ). Conclusion: While none of these have previously associated with HCM, our findings suggest ciliary structure and function may play a role in disease manifestation. Our method is unique by pooling individuals in a large population set to identify potential causative or contributing mutations. Bioinformatic tools, such as OASIS, allow for the identification of previously unrecognized variants that may play a role in the development of HCM. This approach has identified numerous novel genes as possible risk loci.

Psychiatry

2018 ◽  
Author(s):  
Isabel McMullen
Keyword(s):  
Mental Health ◽  
Psychiatric Illness ◽  
Mental Health Problems ◽  
Ethical Issues ◽  
Behavioural Therapy ◽  
Outpatient Clinics ◽  
Personal Stories ◽  
Cognitive Behavioural ◽  
The Uk ◽  
State Examination

Mental health problems are estimated to affect one in four people each year in the UK, making mental illness one of the commonest presentations to GP surgeries, outpatient clinics, and Emergency Departments. Yet many doctors and medical students feel uncertain about how to approach patients with a psychiatric disorder. The key to becoming a good psychiatrist lies in the clinical interview. There are few physical signs or investigations that allow doctors to diagnose psychiatric illness, so a detailed history and mental state examination are important. As a psychiatrist, you are in the privileged position of having patients tell you their personal stories, and the skill is in listening attentively and asking relevant questions to help to clarify parts of the story. The best way to practise these techniques is to watch experienced clinicians at work and to interview patients yourself. Obviously diagnosis is important, so you need to be aware of the types of symptoms that fit with each type of disorder, as well as the medical conditions that may mimic psychiatric illness. Investigations may be necessary to rule out other diseases, and you need to be able to request these appropriately. Psychiatrists have access to a range of treatments—medical (e.g. antidepressants), psychological (e.g. cognitive behavioural therapy), and physical (e.g. electroconvulsive therapy)—and you need to know which ones to recommend. Most of these treatments are delivered in conjunction with the multidisciplinary team, so you should be clear about the roles of each team member. Finally, there is overlap between psychiatry and the law, which can raise interesting ethical issues. It is sometimes necessary to treat a person against their will, for the safety of that person or others, so you need to know about mental health law. Psychiatrists are also often requested to provide a second opinion in difficult capacity assessments.

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