Third-party funded projects
Cystic Fibrosis (CF) is a progressive inherited disease. Due to improved medical treatments and care, people with CF live into their 30s, 40s, and beyond. Genetic screening and/or testing for CF can be done pre-conceptionally (on individuals/parents), prenatally (on the foetus), or postnatally (on the newborn). Testing policies vary across countries, reflecting their socio-cultural, historical, and political contexts, and give rise to practical and ethical questions as well as public discourses.
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?This project proposes to explore the interplay of policies and socio-ethical considerations in the context of testing strategies for CF in Israel and Germany, two countries that are exemplary for adopting contrasting approaches to genetic testing. While CF screening and/or testing in Israel is offered pre-conceptionally and/or prenatally, in Germany it is part of newborn-screening (NBS). The decision when and how to test for CF provides a window into diverse and sometimes opposing normative considerations and policies.
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Situated at the interface between sociology, bioethics and law/policies, the aim of this empirical bioethics project is to gain in-depth understanding of the contexts that shape national policies and public perspectives, and of the impact of such policies on key-stakeholders (professionals, parents and patients).
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This project involves policy research, conceptual analysis and comparative empirical research with professionals, parents and adult patients. The data generated will be analysed qualitatively, aiming to inform and benefit health-related policymaking.
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Funded by: DFG (HO 7477/1-1)
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Project Summary
Marginalisation is a social determinant of health and can be influenced through health policy and practice design. According to the German Robert Koch-Institute (RKI), people can be marginal- ised by being pushed to the margins of society by economic, social, geographic, or cultural structures, leading to a loss of resources, influence and status. Over the last years, a growing body of empir-ical and conceptual work has been focussing on the implications of marginalisation in the context of public health. Research is being conducted on this or related concepts, such as ‘other- ing’ and ‘vulnerabilities’ with a special focus on migrants as marginalised populations in the German public health domain.
However, there is a need for further empirical and normative analysis and better transla- tion into effective and equitable health policy and practice. Gaps exist especially in the recogni- tion of the various factors that contribute to marginalisation in public health also with regard to intersectionally relevant dynamics such as dealing with ableism, racism, sexism or classism. The proposed research project is situated within the discipline of public health ethics, with a special focus on effective and just public health policy and practice.
In this project we aim to 1) Reconstruct underlying normative assumptions about the ‘general public’ in public health policy and identify who is thereby left out, 2) Gain insights into how ‘marginalisation’ is perceived in public health policy and practice and what is being suggested to overcome it, 3) Explore how ‘marginalisation’ is experienced by affected groups and what are their needs, 4) Further develop or reconceptualise understanding of marginalisation and identify mechanisms of exclusion, and 5) Develop strategies to integrate an empirically and normatively rich understanding of marginalisation into public health policy and practice.
Our work programme includes screening policy documents and grey literature and con- ducting a review of academic literature. We will conduct a qualitative interview study in which we will interview four groups: Individuals from marginalised groups, representatives of NGOs and social welfare organisations, public health researchers, and public health officials. We will con- duct an empirically informed normative analysis, using major frameworks and theories from public health ethics, feminist theory and social epistemology.
The project builds upon preliminary research on unheard voices in public health policy during the pandemic, during which we also conducted qualitative interviews. The involved researchers are experts in the fields of public health/epidemiology, and public health ethics (with a special focus on vulnerability and justice).
Antragstellende: Cristian Timmermann, Keren Landsman, Verina Wild
PI: Verina Wild
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DFG-Basismodul und projektspezifische Workshops. Projektnummer: 523311202
Project summary
As evidence on the dependence of human health on a healthy environment increases, it becomes necessary to specify and justify ethical values, potential ethical conflicts and dilemmas, and the different responsibilities at the individual, institutional and population level towards sustainable and healthy living conditions. Health inequalities need to be identified and assessed in how far these amount to health inequities, in particular regarding increasing and perpetuated vulnerabilities, burdening already disadvantaged groups disproportionately. This project works towards a mapping and preliminary assessment of the main ethics and justice issues in relation to environmental health and develops a larger funding application on the multiple dimensions of ethics and justice in relation to healthy environments.
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Antragstellende:
Dr. Cristian Timmermann, Institute of Ethics and History of Health in Society, Medical Faculty
Prof. Dr. Kerstin Schl?gl-Flierl, Moral Theology, Catholic Theological Faculty
Prof. Dr. Verina Wild, Institute of Ethics and History of Health in Society, Medical Faculty
University of Augsburg, Germany
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Mitarbeit am Projekt: Cristian Timmermann, Katharina Wabnitz
Programm zur F?rderung der Einwerbung hochkar?tiger Drittmittel, Universit?t Augsburg
The field of mobile health technologies (mHealth) is growing and changing rapidly. Technologies such as apps, wearables and sensors are increasingly becoming an essential part of a healthy lifestyle, prevention and disease control.
The aim of the international and interdisciplinary META project is a comprehensive analysis of the ethical, legal and societal aspects (ELSA) of these technologies. The project thus picks up elements of the Federal Republic of Germany's funding policy goals from the "Federal Government's Health Research Framework Programme". The project, funded by the Federal Ministry of Education and Research ( BMBF), investigates the opportunities, benefits, risks and challenges of mHealth as well as overarching aspects of the digital transformation at the individual, societal and global levels. Based on multidisciplinary research results, the META team also advises various mHealth stakeholders with the aim of supporting responsible, sustainable and user-oriented mHealth innovations. In addition, the team is developing a website to make their results accessible at a low level outside the scientific context.?
The project moved from? LMU Munich?to the University of Augsburg in December 2020 with project leader Prof. Dr. med. Verina Wild.
Our project explores practices and community-based projects that support the health of migrant workers / migrants in the low-wage sector during the Covid 19 pandemic. It is a challenge to find out "what works" to improve the health of these groups in a specific place and social context. There are large gaps in knowledge about the health of migrant workers / migrants in the low-wage sector, which may contribute to the epistemic and structural inequities faced by some of these individuals. A significant amount of knowledge that could improve the management of the health of these groups is not published in academic journals, but is captured in the 'grey literature'. We are therefore investigating what can be learned from the collection, review and analysis of grey literature generated during the Covid 19 pandemic. In the project, we are developing a methodological toolkit for non-governmental organisations working with these low-income groups to systematically access the knowledge contained in the grey literature.
Funded under the Public Health Emergency Preparedness and Response Ethics Network (PHEPREN) and the Ethics and Governance Unit, World Health Organization (WHO). Project coordinators: Nancy Berlinger (The Hastings Center, USA), Lisa Eckenwiler (George Mason University, USA), Verina Wild (PI, University of Augsburg, Germany).
Qualitative interview study on the ethics of restrictive infection control measures. More information on the upcoming project start, you will find here. Project management: Angus Dawson (University of Sydney), Jan-Christoph Heilinger (RWTH Aachen), Verina Wild (PI, University of Augsburg).
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?The implementation of genomics in prenatal medicine raises important ethical questions about the meaning of risk, health, disease and disability, social inclusion and exclusion, and the scope of public health interventions or reproductive decisions. These questions require careful analysis within their specific practical context.
This project (ES/T00908X/1), funded by the UK Economic and Social Research Council, takes non-invasive prenatal testing (NIPT) - the analysis of cell-free foetal DNA in maternal blood - in England, France and Germany as a case study. The aim of this empirical bioethics project is to examine in depth the ethical issues arising from the introduction of NIPT into routine antenatal care in three different socio-cultural contexts within Europe.
To this end, our team uses document analysis, conceptual analysis and qualitative social science methods to examine the value systems and socio-political characteristics that shape the use, regulation, and public debate of NIPT in different national contexts. The contextual understanding of the practical-ethical issues raised by NIPT is important for the formulation of ethical and practical guidelines.
The project is being carried out under the leadership of Dr Ruth Horn (Associate Professor in Ethics) at the University of Oxford since October 2020. International cooperation partners are Prof. Dr Claudia Wiesemann (University of G?ttingen) and Dr Carine Vassy (University of Paris 13, Iris).
COVID-19: Was bedeutet das für Sie?
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The COVID 19 pandemic poses unprecedented challenges for policy makers, health authorities and societies. The social and economic impacts will likely be felt for years to come. In this situation, it is important to examine how people respond to the policies introduced and what actions they take on their own initiative in addition to the official government recommendations. What motivates citizens to follow, adapt or ignore the advice of the authorities? What do they do to protect themselves and others, and what role do technologies play in this? Who or what do people trust in these uncertain times? What do people need to feel safe in times of crisis?
The project explores these important questions in several European countries, including Austria, Belgium, France, Germany, Italy, the Netherlands and the UK. We use a multi-site qualitative research design that includes in-depth and open-ended interviews.
This longitudinal qualitative study, which involves 'soft comparisons' between countries over a period of about six months, allows us not only to identify differences and similarities in how people responded to the pandemic and the resulting policy response, but also to understand why. These findings should provide valuable guidance for pandemic preparedness, prevention and mitigation in the countries we studied and beyond.
Dr Ruth Horn is leading the French arm of this study, together with Dr Marie Gaille (CNRS). This research is part of a longitudinal, qualitative and multinational study on? solidarity in times of a pandemic led by Professor Barbara Prainsack from the University of Vienna.
In 2018, France and the UK announced increased collaboration between Genomics England and the French Médecine Génomique 2025 project to create a world-leading public service for genomic medicine. Successfully achieving this goal will require the development of joint approaches, not only to the standardisation of new technologies, but also to ethical standards in research and practice.
For the first time, two publicly funded health systems will incorporate the use of whole genome sequencing into routine patient care; yet each system is based on different values and principles that lead to different ways of implementing new genomic technologies into clinical practice. In order to develop common approaches to good ethical practice, we need a clear understanding of existing debates, regulations and practices, as well as the underlying norms in each country.
UK-FR GENE provides a platform for (previously) UK and French researchers and other stakeholders in the field to reflect on ethical and social issues of genomic technologies and their clinical application that arise in their respective national contexts. The aim is to identify pressing ethical issues in each country and understand their socio-cultural and normative underpinnings. Exploring these issues from a comparative perspective will allow us to shed new light on them and offer possible solutions adapted to each context. UK-FR GENE creates the opportunity to develop joint research agendas, collaborative projects and grant applications that will lead to important outcomes that influence ethical standards in the use of genomic technologies and their implementation in clinical practice in the UK and France.
UK-FR GENE was initiated in 2018 by Dr Ruth Horn, together with Dr Marie Gaille (CRNS).
We would like to expand the network to include researchers and stakeholders from Germany and other countries. Please contact Dr Ruth Horn if you would like to know more about our work.
The UK-FR GENE Position Statement can be found here:
Unheard Voices in the Covid-19 Pandemic
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The study "Unheard voices in the Covid-19 pandemic" is carried out by the project team: Keren Landsman, Jessica Alina Sell and Verina Wild (lead). The aim of the project is to support effective and fair pandemic preparedness for the current Covid-19 pandemic, but also for future pandemics. Methods include reviewing literature about neglected voices and epistemic injustices, and conducting interviews to find out whose voices might have been neglected during the pandemic. By collecting those testimonials, we will be able to create a more comprehensive view of different populations who are affected by the pandemic.
In the process, we aim to get testimonials of people that work with especially vulnerable and typically underrepresented groups in our society in form of expert-interviews. Four testimonials about “Unheard Voices” will be collected in Germany and four will be collected in Israel. With its focus on epistemic injustices and neglected voices, the data material will complement other projects within the team Ethics of Medicine at the University of Augsburg, especially the
“Shelter in Place” project, funded by VolkswagenStiftung. The material will also inspire the preparation of a strategic plan how to turn the stories into a podcast.
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The study is funded by the Fo?rderprogramm des Staatsministeriums fu?r Wissenschaft und Kunst des Freistaats Bayern.
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Involved Researchers: Prof. Dr. Verina Wild; Dr. Keren Landsman; Jessica Alina Sell.