NIHRDataInsights/HRCSData huggingface dataset:
Title: Epigenetics, Ethics and Society: Accounting for Responsibility in the Biomedical Sciences .
Funder: Wellcome Trust

Abstract: Epigenetics - the study of variations in gene activity not caused by changes to the underlying DNA - is an ever-more important area of research within the biomedical sciences. Further, there is policy and practice interest in the potential of epigenetics for health and society. However, it is as yet under-studied by social scientists and bioethicists (although their attention is increasingly fixed upon it). The proposed research will help to address this deficit. It will ask how epigeneticists u nderstand, frame and respond to the social and ethical implications of their research. The project will thus cast new light on how scientists understand the responsibilities they have to biomedicine, policy, and wider society. Further, the study will explore the extent to which these may shape the conduct and direction of the science itself. Methodologically, the research will involve ten qualitative interviews with UK opinion-leaders in epigenetics (conducted over 12 months), leading to at leas t one high-quality peer-reviewed publication. It will develop the previous and current work of the applicant, whilst also feeding into wider science and technology studies (STS) and bioethics debates around technoscience and responsibility. The study links with Challenge 1 of the Wellcome Trust Strategic Plan 2010-2020.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: The ethical dilemmas experienced by front line healthcare professionals at times of austerity; the case of Greece.
Funder: Wellcome Trust

Abstract: The 2008 financial crisis and the austerity measures which followed, have gravely affected healthcare systems in many European countries, including Greece. For instance, Greece has witnessed hospital budgets reduced by 40% and increased unemployment, which has left 1.5 million people without public health insurance. Studies in developing countries show that the availability of healthcare resources shapes the nature and intensity of ethical decision-making for frontline staff. Yet, the effects of austerity on the ethical dilemmas of medical practice in developed countries remain unexamined. This study seeks to explore the ethical issues of health professionals in austerity-laden countries. Its initial focus will be on Greece where the austerity measures have had a dramatic effect on the healthcare landscape. This study's key goal is to investigate the ethical issues faced by frontline healthcare professionals at times of financial instability and austerity. It will be multi-disciplinary in using both semi-structured interviews and ethical analysis in exploring the effects of austerity on doctor-patient relationships, and relationships between healthcare professionals and the institutions in which they operate. This study's findings will provide rigorous and independent data that could inform health policy in Greece and other countries that consider restructuring of their healthcare system.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: Impact of lay-controlled digital social networks on health and health systems
Funder: Wellcome Trust

Abstract: The ability to access and disseminate information through digital communication networks (e.g. internet, mobile phones) is changing societal activities including national politics and accountability. Using digital communication, lay-controlled networks with particular health interests are becoming powerful political lobby groups. We seek to describe these networks, the impact they have and how this varies. Initial scoping searches of published literature will establish the extent to which they a re documented and seek evidence of their prevalence and characteristics. We will then undertake case studies of 3-5 networks, exploring their structure, function, participants, impact, how they came into being and sustain themselves, and what changed as they matured. Case studies will draw on literature, on line material and key-informant interviews. This exploratory study builds on the research teams theoretical work and is complimented by secured funding for research team visits. Lay-controlle d networked communication is likely to increase as the public seek to use it to improve their situation. Those responsible for health care provision will need to understand the potential impact and how to respond to enhance benefit and limit harm, whilst respecting individual autonomy. Impact may be greater in countries where accountability of health providers and associated governance is weak.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: The Ethical Significance of Consciousness for Bioethics.
Funder: Wellcome Trust

Abstract: In recent decades the science of consciousness has made great strides, revealing that our conscious mental lives have a complex and delicate architecture. It has identified glimmers of consciousness in human beings previously thought to be unconscious. This work has so far outpaced reflection on the ethical significance of many aspects of consciousness. But many aspects of consciousness are ethically significant: our understanding of consciousness plays subtle roles in a range of key ethical con cepts, for example, moral status, well-being (how well a person's life is going), and autonomous agency. This research project will be the first comprehensive study of its kind: a study of the ethical significance of consciousness relevant to medical practice. Through interpretation of scientific results and rigorous philosophical analysis I will develop an account of the value of consciousness and I will apply this analysis to important concepts and issues in bioethics. I will disseminate my findings by publishing a series of articles and a monograph on the ethical significance of consciousness for bioethics, by presenting my work at conferences in the UK and internationally, by writing editorials and blog posts for popular publications, and by conducting public lectures, panel discussions, and media interviews.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: Pesticides and global health: an ethnographic study of agrochemical lives.
Funder: Wellcome Trust

Abstract: The overall aim is to provide a qualitative account of the ways in which health and environmental arguments concerning agrochemicals come into being around the world. Looking beyond the pro's and con's of agrochemical use, the objective is to understand how medical, policy, and public narratives attach to, or are constructed by, agrochemicals in different cultural contexts. Ethnographic and interview research will be conducted into one product, the herbicide paraquat, which has attracted partic ular controversy. In Sri Lanka agrochemicals are implicated in three contemporary health crises (suicide, chronic kidney disease, and diabetes), as a result of which a series of regulations have been put in place and paraquat was recently banned. Focusing on paraquat as a narrative device to explore much broader themes, the research will produce a 'biographical narrative' of agrochemical use, regulations, and bans to identify tensions, frictions, and controversies and their political, economic, and cultural roots. Interviews and ethnographic observations will be conducted with different actors at different points, from the manufacturing company through sales people and individual farmers to health workers, researchers, and activists. Opportunities arising from the research include advancing theoretical and policy/practice knowledge on agrochemicals, culture, political-economy, and global health.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: The Production And Self-Production Of Model Patients Through Health Information Technology (IT).
Funder: Wellcome Trust

Abstract: The Department of Health report 'The Power of Information: Putting us all in control of the health and care information we need' (2012) heralded a new policy intended to place patients at the centre of managing of their health, and to promote a culture of 'no decision about me without me'. This policy assumes that health information belongs to patients and that patients are willing and able to use health IT (e.g. electronic interfaces or health applications) to manage their care. Through the use of IT, patients will be able to access their medical records online, and interact with healthcare professionals. They will also become knowledgeable about available treatments, and empowered to make informed choices. The portrayal of patients in health policy shapes decisions about what technologies are developed and this, in turn, influences the nature, processes and the quality of healthcare delivery. We propose a scoping study, which aims to explore how IT is involved in the attainment o f patients' self-management in the context of the current and alternative policy. The study will gather information from interviews with relevant stakeholders (NHS Commissioning Board, health ICT providers and patient associations) and from relevant documents.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: Human Ageing Genomic Resources: Integrated databases and tools for the biology and genetics of ageing .
Funder: Wellcome Trust

Abstract: The Human Ageing Genomic Resources (HAGR, http://genomics.senescence.info) is an online collection of research databases and tools for the biology and genetics of ageing. HAGR features several databases with high-quality manually-curated data: (i) GenAge, a database of genes associated with ageing in humans and in model organisms; (ii) AnAge, a collection of longevity records and complementary life-history traits for >4,000 species; (iii) GenDR, a database of genes associated with the life-exten sion effects of dietary restriction; and (iv) the LongevityMap, a database of human genetic variants associated with longevity. These databases are widely-used by the research community and have been invaluable in, for example, functional genomics, systems biology and evolutionary studies of ageing. This proposed project aims to maintain, develop and expand HAGR to continue serving the needs of the ageing research community. Specifically, we propose to: 1) Maintain, update and enhance existin g databases. 2) Integrate additional types of data: 2a. Integrate our gene-centric databases with information on genes associated with age-related diseases; 2b. Integrate AnAge with genomic data. 3) Optimize the interface and develop new tools: 3a. Implement a common bibliographical system to improve data integration and community engagement. 4) Develop a new database of genes associated with cell senescence.


Research activity codes: 2.6 RESOURCES AND INFRASTRUCTURE (AETIOLOGY);1.5 RESOURCES AND INFRASTRUCTURE (UNDERPINNING)
Health categories: GENERIC HEALTH RELEVANCE
Title: The yeast non-coding RNA functional genomic resource.
Funder: Wellcome Trust

Abstract: Eukaryotic genomes are pervasively transcribed, producing numerous non-coding RNAs (ncRNAs). Some ncRNAs have been extensively analysed and appear to participate in essential cellular functions. ncRNAs have also been found associated with disease states. However, the majority of ncRNAs have not been ascribed to any specific function, mainly due to the lack of molecular resources. To facilitate large-scale functional analyses of ncRNAs and to systematically determine their roles in essential cell ular processes, we have constructed the first collection of molecular barcoded ncRNA deletion strains in the model organism Saccharomyces cerevisiae. Here, we propose to expand and augment this resource, providing new tools for the functional analysis and detection of higher order interactions between different ncRNAs. Our key objectives will be to (1) create new ncRNA deletions in Saccharomyces cerevisiae BY4743 and sigma1278b (2) create a Synthetic Genetic Array strain resource for nc RNA genetic network analysis (3) create a collection of inducible overexpression plasmids of ncRNAs for use in Synthetic Dosage Lethal analysis and (4) provide interfaces to genome-scale ncRNA genotype and phenotype data. Resources will be deposited in repositories for yeast strains/plasmids and new databases and tools developed to facilitate distribution of datasets.


Research activity codes: 1.5 RESOURCES AND INFRASTRUCTURE (UNDERPINNING)
Health categories: GENERIC HEALTH RELEVANCE
Title: Biomedicalization of Death: The Social Impact of Life Support Technology in Bangladesh.
Funder: Wellcome Trust

Abstract: This project aims to understand the biomedicalization (Clarke et al 2003) of death in the cultural context of contemporary Bangladesh. This study will carry out by ethnographic research to explore biomedical and social practices in four hospitals in Chittagong and Dharka. Recent developments in biotechnology have resulted in the production of new forms of life and death. Life-prolonging technologies encompass the possibility to modify elementary processes of life leading to redefinitions of he alth, illness, and death and also have made the determination and definition of death difficult and controversial. A seemingly insoluble tension exists in relation to the life prolonging technologys relationship to the dying patients family members. This research will explore how family members manage the end-of-life decision of close kin who are on life support in hospitals and how do class, gender, religion and morality impact on this decision-making? This research also focuses on how econom ic status affects access to different levels of technological intervention and therefore shapes different experiences of death.


Research activity codes: 8.2 HEALTH AND WELFARE ECONOMICS
Health categories: GENERIC HEALTH RELEVANCE
Title: Racialized medicine: the use of racial/ethnic categories in prescribing guidance.
Funder: Wellcome Trust

Abstract: How should health practitioners address recommendations to tailor drug prescriptions based on a patient's race/ethnicity? NICE guidelines on hypertension stipulate specific treatments for 'black patients of African or Caribbean decent', and prescribing guidance for several other drugs also differentiates by race/ethnicity. We know that the use of racial/ethnic classifications in medicine can be socially and scientifically contentious, particularly where putative links are made to genetic differe nces. However, there is a lack of research on the interpretation and use of racially-differentiated prescribing guidance. This project aims to examine the origins and development of such guidance and to identify anticipated issues relating to its implementation. It proposes research combining documentary analysis and qualitative interviews with experts involved in the production of racially-differentiated prescribing guidance. The research will lead to outputs in journals for social scientists a nd medical professionals and ultimately to the development of a larger research proposal focused on health practitioners use of the guidance in everyday practice. The proposed work aligns with Challenges 1 and 4 in the Wellcome Trust Strategic Plan 2010-2020, namely to influence policy and practice that ensures the effective delivery of interventions, and foster understanding of the social implications of genetic research.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE
Title: The impact of educational comics on feelings and attitudes towards health conditions.
Funder: Wellcome Trust

Abstract: Educational comics can be found about a wide range of illnesses and may have a number of purposes, including raising awareness; preparing patients for procedures; assisting with decision making; promoting self-management; or simply increasing understanding and acceptance of a condition. While it is important to evaluate the factual comprehension of health information gained by reading education comics, it is also essential to consider how reading a comic may impact on a patient's (or relative's) feelings and attitudes. Through interviews with patients and relatives of people with a range of conditions, this research will investigate how, and to what extent, educational comics can provide support in dealing with feelings and attitudes associated with health conditions, for example, fears and anxieties, social interactions and relationships. It will also identify any potential weaknesses of the medium in this respect, as well as suggesting how educational comics might be evaluated in way s which take account of their potential social and psychological benefits as well as how they convey factual information.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: GENERIC HEALTH RELEVANCE
Title: District health management and public service delivery: Evidence from India's flagship health programme.
Funder: Wellcome Trust

Abstract: There is now a strong body of evidence of what interventions are most effective in improving health in low- and middleincome countries but little is known about how to ensure widespread coverage in the population. Weak public service delivery has long been regarded as the key obstacle, particularly in countries with the greatest gaps in service coverage. Nowhere is the issue more salient than India, where the state has struggled to deliver basic public services to its population, despite the presence of elite national institutions and a highly educated top brass of civil servants. One reason for the current status quo is possibly poor managerial quality in the civil service, yet there is almost a complete absence of evidence linking practices in civil service organisations to effective service delivery and outcomes. The research aims to study the relationship between the management practices civil servants in district health offices operate under and the delivery of health services in Madhya Pradesh, India. We examine this question in the context of the National Rural Health Mission (NRHM), India's flagship health programme. Three phases of work are envisaged. The first phase (9 months) builds on previous research in economics to develop a tool that will ultimately provide a quantitative measure of managerial quality in our particular setting. The development of the tool will rely on qualitative methods of research to get perspectives from key informants on what dimensions of management are most important for staff productivity, as well as to provide a rich understanding of the bureaucracy in place. The second phase (3 months) involves the collection of management data from health bureaucrats in the 45 districts of Madhya Pradesh. The primary method of data collection will be phone interviews, in which interviewers score districts across a number of different dimensions of management. These will be complemented with face-to-face interviews in a subset of districts for the purposes of validation. In the third phase (6 months), the management practices data will be linked to household and health facility data from the District Level Health Survey to examine whether managerial quality is linked to better implementation of the NRHM and higher coverage of maternal and child health services. The research has the potential to improve health outcomes by informing government policy on ways to ensure more effective health service delivery. It will lead to greater understanding of management practices in India's civil service and ultimately better implementation of key government health programmes.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES)
Health categories: GENERIC HEALTH RELEVANCE
Title: Genome-wide analysis of combinatorial cis-regulatory control of early blood progenitor cells
Funder: Medical Research Council

Abstract: The coordinated expression of genes lies at the heart of development, with complex gene-regulatory networks governing the spatial variation and temporal sequence of gene expression. The primary control of gene expression is exerted by transcription factors which unsurprisingly therefore represent some of the most powerful regulators of normal development and disease. However, to understand the underlying mechanisms, it will be important to identify downstream target genes as well as the combinatorial transcription factor interactions that form the building blocks of transcriptional networks. Recognizing the components and hierarchy of gene-regulatory networks will not only provide fundamental insights into normal development but will also be instrumental to understanding how deregulation of networks contributes to pathology. Haematopoiesis has long served as a model process for studying stem cells and represents the best characterised adult stem cell system. Transcription factors such as Scl/Tal1, Gata2, or Runx1 are critical for the specification and/or subsequent development of haematopoietic stem cells (HSCs). The Gottgens group has a long track record of analysing transcriptional regulatory elements and provided the first molecular characterisation of any element active in HSCs in vivo. In addition, the group has developed bioinformatic tools to identify functionally related HSC regulatory elements and most recently was the first to publish ChIP-Seq analysis for any key blood stem cell regulator. This study not only generated a genome-wide catalogue of binding events for the HSC master regulator Scl but also suggested putative combinatorial interactions between Scl and other HSC regulators such as Gata2, Runx1 and Meis1. The Gottgens group is therefore ideally placed to take advantage of new post-genomic technologies to undertake a comprehensive reconstruction of the transcriptional networks controlling HSCs. The current proposal has four specific aims: 1) ChIP-Seq analysis for 8 key regulators predicted to co-regulate target genes with Scl as well as key histone marks 2) Genome-wide expression profiles for wild-type and transcription factor knock-down haematopoietic progenitor cells 3) Integrate data from 1) and 2) to reveal combinatorial patterns of transcriptional control 4) Transgenic validation of candidate regulatory elements representative for new regulatory codes identified above Concerted experimental and bioinformatic approaches will provide important new insights into transcriptional control of blood cells and open up important lines for future investigation. Moreover, the proposed study may serve as a blueprint for deciphering transcriptional control mechanisms and regulatory networks more widely, both in the context of normal developmental/stem cell systems as well as the molecular understanding of disease.


Research activity codes: 1.1 NORMAL BIOLOGICAL DEVELOPMENT AND FUNCTIONING;2.1 BIOLOGICAL AND ENDOGENOUS FACTORS
Health categories: GENERIC HEALTH RELEVANCE;BLOOD