Dr. Ruth Horn (Associate Professor, Oxford)

Deputy Director, Akademische Oberrätin
Ethik der Medizin
Phone: 0821 598 71004
Email: ruth.horn@med.uni-augsburg.de
Room: 7124 (Faculty of Medicine)
Address: Stenglinstraße 2, 86156 Augsburg

Ruth works on ethical questions raised by medical practices and new technologies at the beginning and end of life in different socio-cultural contexts. Her research is at the intersection between sociology, bioethics and law/social policy. She has developed a comparative empirical bioethics approach to understand how ethical problems arise and are addressed in clinical settings where ethically sensitive decisions are made. Her approach combines literature review (e.g. professional literature, legal texts, professional guidelines, daily media), concept analysis (e.g. autonomy, dignity, empathy, solidarity in different socio-cultural contexts) and ethnographic research (interviews, observations, focus group discussions).

 

Beginning of Life

Ruth's current research focuses on ethical issues arising from the clinical implementation of genomics in antenatal care. She is leading an  ESRC-funded project exploring the ethical questions raised by the introduction of non-invasive prenatal testing (NIPT) into routine antenatal care in England, France and Germany. Previously, she has done research on the ethics of the prenatal assessment of genomes and exomes as part of the UK-wide  PAGE project

 

Genomics

Ruth is co-lead and founder (with Marie Gaille, CNRS) of  UK-FR GENE (UK-France Genomics and Ethics Network), a network for British and French researchers, policy-makers and practitioners to reflect on the ethical questions arising from the clinical applications of genomic technologies in each national context. If you are interested in our network, please get in touch!

 

End of Life

In her previous research, Ruth has examined ethical questions at the end of life (e.g. assisted dying, continuous deep sedation, advance directives) with a particular focus on the tensions between patient autonomy and physicians' responsibility to protect life.

 

Covid-19

Ruth is country team leader of the French study ' COVID-19: Comment cela vous affecte-t-il?' which is part of a multinational project on 'Solidarity in times of pandemics', led by Professor Barbara Prainsack at the University of Vienna.

Ruth studied sociology at the Ludwig-Maximilians University, Munich, and the University of Paris Diderot. In 2009, she completed her PhD in Sociology of Ethics at the Ecole des Hautes Etudes en Sciences Sociales, Paris. From 2010 to 2013, she was a Marie Curie Fellow at the Centre for Ethics in Medicine, University of Bristol. Since 2013, Ruth has been a member of the  Ethox Centre, University of Oxford. She has been Associate Professor in Ethics at the University of Oxford since 2020. At the same time, she has been Academic Senior Lecturer and Deputy Head of  Ethics in Medicine at the University of Augsburg since 2021. Ruth is also an associate member of the  SPHEREresearch centre, CNRS, University of Paris Diderot.

 

Ruth is regularly engaging with and contributing to the development of policy:

 

Inter-/National level

2020: Contributor to Written evidence from the Wellcome Centre for Ethics and Humanities (COV0156) into The Government’s response to COVID-19: human rights implications. 2020: https://committees.parliament.uk/writtenevidence/8681/html/

2019-2020: Chair of the British Society of Genetic Medicine (BSGM) working group on ‘prenatal, preconception, pre-implantation genetic testing/diagnosis’, BSGM Ethics and Policy Committee.

2019: Review of the Royal College of Obstetricians and Gynaecologists’ Scientific Impact Paper on ‘Evidence to Support the Clinical Utility of Prenatal Exome Sequencing in Evaluation of the Fetus with Congenital Malformations’.

2018: Review of Briefing Note ‘Whole genome sequencing of babies’, Nuffield Council of Bioethics.

2018: Policy-consultation with the French ‘General Inspectorate of Social Affaires’ (Inspection General des Affaires Sociales, IGAS), to inform report ‘Évaluation du plan national 2015-2018 pour le développement des soins palliatifs et l’accompagnement en fin de vie’ (eds. N. Bohic, F. Fellinger, M. Saïe and L-C. Viossat), telephone interview with L.-C. Viossat, 23.01.2018. 

2017: Advisory group on ‘Advance Directives“ of the French National Centre of Palliative Care and the End of Life (Centre National des Soins Palliatifs et de la Fin de Vie), Paris, resulting in the report (eds. I. Marin, S. Bretonniere) ‘Un an de politique active en faveur des directives anticipées. Quels progrès, quelles limites, quelles pistes pour l’avenir ?’, 2018.

2014: Policy-consultation with the Parliamentary Mission of Information on “End of Life”, organised by J. Leonetti and A. Claeys, French National Assembly, Paris, 08.10.2014. The resulting report informed the 2016 law on the end-of-life ‘Loi 2016-87 du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie. Journal Officiel 2016. 0028’.

 

Local level

2020: ‘Guidance for research in response to humanitarian emergencies’, CUREC, University of Oxford

2020: ‘Data Handling Scoping’ (workshop), CUREC, University of Oxford

2019: ‘Empirical studies involving qualitative research methods’ (OxTREC application guide)

 

 

Awards

2020: Associate Professor in Ethics, Medical Sciences Division, University of Oxford

2015: University Research Lecturer, Medical Sciences Division, University of Oxford 

 

Research grants/ PI

2020: Economic and Social Research Council, Research Grant, ES/T00908X/1, Project title: ‘Non-invasive prenatal genetics and genomics in England, France and Germany - Exploring practical ethical issues 'on the ground'’, £908.340.

2020: Medical Division COVID-19 Research Response Fund, British Academy Special Research Grants: Covid-19, Co-I, Project title: ‘COVID-19: Comment cela vous affecte-t-il?, Une étude qualitative comparative et longitudinale’, country lead for French study arm of multinational project: ‘Solidarity in times of a pandemic: What do people do, and why?, led by Prof. B. Prainsack, University of Vienna, £19.250.

2020: NDPH Pump Priming Award, Nuffield Department of Population Health, University of Oxford, Co-I, to investigate the ethics of ‘Synthetic Cohort Studies and Biobank’, £28.590.

2013 – 2016: Ethics and Society Research Fellowship, 100553/Z/12/7, Wellcome Trust, PI, Project title: Between patient autonomy and physicians’ responsibility to save life: The implementation of advance directives in three European countries (England, France, and Germany), £173.658.

2010 – 2012: Marie Curie Intra-European Fellowship, ADVANCED-FP7-PEOPLE-2009-IEF-254825, European Commission, PI, Project title: Advance directives in England and France, €171.741.

2010-2012: Post-doctoral Grant, Ligue Nationale Contre le Cancer, PI, €70.000.

2005 – 2009: PhD Grant, Caisse Nationale d’Assurance Maladie des Travailleurs Salariés (CNAMTS), PI, €60.000.

 

Small grants

2020: Seed-Meeting Grant, Co-I, Higher Education, Research and Innovation Department, Embassy of France, London, workshop entitled ‘UK-FR GENE (Genomics and Ethic Network)’, October 2020, £6000.

2019: Big Data Institute Workshop Grant, University of Oxford, PI, to contribute to a French-UK workshop entitled ‘Comparative Perspectives on Ethical, Legal and Social Issues of Genomics in Research and Practice’, £7800.

2019: French Embassy Workshop Grant, Co-I, Higher Education, Research and Innovation Department, Embassy of France, London, to contribute to a French-UK workshop entitled ‘Comparative Perspectives on Ethical, Legal and Social Issues of Genomics in Research and Practice’, €2500.

2014 – 2018: Junior Research Fellowship, Linacre College, Oxford, £300 per annum.

2014: Society and Ethics Small Grant, Wellcome Trust, PI, to organise a workshop entitled ‘Autonomy and Solidarity two conflicting values in bioethics? British and French perspectives on two core values in health care and medicine’, £3.070.

 

Visiting fellowships

Sept/Oct 2020: Guest researcher of the DEA Programme (Directeurs d’Études Associés, or Associate Research Directors), Fondation Maison des Sciences de l’Homme and French Secretary of State for Universities, Paris, €3400.

October 2017: Brocher Foundation Residency Fellowship 

Project: Prenatal whole genome/exome sequencing and professional responsibilities in shaping public healthcare provision. 

March 2017: Guest Professorship, University Paris 7, Paris Diderot, SPHère

Project: Ethical issues of prenatal whole genome sequencing €3800.

Nov/Dec 2012: International Visiting Fellowship in Medical Ethics, Institute for Medical Ethics and History of Medicine, Ruhr-University, Bochum (GER)

Project: Advance directives in England, France and Germany, £4000.

May 2012:Visiting Scholar, Hastings Center (NY, USA)

Project: Ethical and economic aspects of advance directives

April 2012: Visiting Scholarship Caroline Miles, The Ethox

Project: Legal and ethical issues of advance directives £2000.

Since 2022 Member of the scientific advisory boards of the German Human Genome-Phenome Archive

Since 2021 Member of the CNRS Ethics Committee ( COMETS)

Since 2021 Member of the UK  Fetal Genomics Group der British Society for Genetic Medicine.

Since 2020 President of the  European Association of Centres of Medical Ethics (EACME). 

Since 2020 Chair of the working group ‘Prenatal Genetic Testing’ of the  British Society for Genetic Medicine.

Since 2018 Co-lead and funder of  UK-FR GENE (UK-France Genomics and Ethics Network)

Since 2018 Member of Oxford Tropical Research Ethics Committees (OxTREC).

2018-2020 Co-lead of the discussion group ‘Ethics und AI’, Big Data Institute Film Discussion Group, University of Oxford.

2018-2020 Secretaire General of the EACME.

2016-2018 Treasurer of the EACME.

2017 Member of the advisory group on ‘Advance Directives“ of the French National Centre of Palliative Care and the End of Life (Centre National des Soins Palliatifs et de la Fin de Vie), Paris, resulting in the report (eds. I. Marin, S. Bretonniere) ‘Un an de politique active en faveur des directives anticipées. Quels progrès, quelles limites, quelles pistes pour l’avenir ?’, 2018.

 

Publications

Horn, Ruth
2022 | 2021 | 2020 | 2019 | 2018 | 2017 | 2016 | 2015 | 2014 | 2013 | 2011 | 2010 | 2009 | 2006

2022

Zimmermann Bettina M., Wagenaar Hendrik, Kieslich Katharina, Prainsack Barbara, Meyers Gert, Buyx Alena, El-Sayed Seliem, Fiske Amelia, Galasso Ilaria, Geiger Susi, Hangel Nora, Horn Ruth, Johnson Stephanie, Kuiper Janneke M.L., Lucivero Federica, McLennan Stuart, Paul Katharina T., Pot Mirjam, Radhuber Isabella, Samuel Gabrielle, Sharon Tamar, Siffels Lotje, Van Hoyweghen Ine, Awad Sula, Bourgeron Théo, Eichinger Johanna, Gaille Marie, Haddad Christian, Hayes Sarah, Hoffman Andrew, Jasser Marie, Kenens Joke, Lanzing Marjolein, Libert Sébastien, Lievevrouw Elisa, Marelli Luca, Ongolly Fernandos, Phillips Amicia, Pinel Clémence, Riesinger Katharina, Roberts Stephen, Saxinger Gertrude, Schlogl Lukas, Schönweitz Franziska, Sierawska Anna, Spahl Wanda, Stendahl Emma, Vanstreels Siemen, Vidolov Simeon, Weiss Elias. Democratic research: setting up a research commons for a qualitative, comparative, longitudinal interview study during the COVID-19 pandemic. https://doi.org/10.1016/j.ssmqr.2022.100158
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Perrot Adeline, Horn Ruth. Health professionals and scientists’ views on genome-wide NIPT in the French public health system: critical analysis of the ethical issues raised by prenatal genomics. https://doi.org/10.1371/journal.pone.0277010
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Horn Ruth. NIPT and the concerns regarding 'routinisation'. https://doi.org/10.1038/s41431-022-01053-6
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Lucivero Federica, Marelli Luca, Hangel Nora, Zimmermann Bettina Maria, Prainsack Barbara, Galasso Ilaria, Horn Ruth, Kieslich Katharina, Lanzing Marjolein, Lievevrouw Elisa, Ongolly Fernandos, Samuel Gabrielle, Sharon Tamar, Siffels Lotje, Stendahl Emma, Van Hoyweghen Ine. Normative positions towards COVID-19 contact-tracing apps: findings from a large-scale qualitative study in nine European countries. https://doi.org/10.1080/09581596.2021.1925634
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Boardman Felicity, Horn Ruth. Not putting the cart before the horse: the complex social and ethical terrain of prenatal exome sequencing. https://doi.org/10.1038/s41431-022-01225-4
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Perrot Adeline, Horn Ruth. Preserving women's reproductive autonomy while promoting the rights of people with disabilities? The case of Heidi Crowter and Maire Lea-Wilson in the light of NIPT debates in England, France and Germany. https://doi.org/10.1136/medethics-2021-107912
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Perrot Adeline, Horn Ruth. Preserving women’s reproductive autonomy while promoting the rights of people with disabilities?: the case of Heidi Crowter and Maire Lea-Wilson in the light of NIPT debates in England, France and Germany. https://doi.org/10.1136/medethics-2021-107912
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Perrot Adeline, Horn Ruth. The ethical landscape(s) of non-invasive prenatal testing in England, France and Germany: findings from a comparative literature review. https://doi.org/10.1038/s41431-021-00970-2
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2021

Lewis Celine, Buchanan James, Clarke Angus, Clement Emma, Friedrich Bettina, Hastings-Ward Jillian, Hill Melissa, Horn Ruth, Lucassen Anneke M., Patch Chris, Pickard Alexandra, Roberts Lauren, Sanderson Saskia C., Wynn Sarah L., Vindrola-Padros Cecilia, Lakhanpaul Monica. Mixed-methods evaluation of the NHS Genomic Medicine Service for paediatric rare diseases: study protocol. https://doi.org/10.3310/nihropenres.13236.1
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Ye Ziqing, Hu Wenhui, Wu Bingbing, Zhang Yueping, Lei Caixia, Williams Isabelle, Shouval Dror S., Kanegane Hirokazu, Kim Kyung Mo, de Ridder Lissy, Shah Neil, Ling Galina, Yerushalmi Baruch, Kotlarz Daniel, Snapper Scott, Horn Ruth, Klein Christoph, Muise Aleixo M., Huang Ying, Uhlig Holm H.. Predictive prenatal diagnosis for infantile-onset inflammatory bowel disease because of interleukin-10 signalling defects. https://doi.org/10.1097/mpg.0000000000002937
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Gaille Marie, Horn Ruth. The ethics of genomic medicine: redefining values and norms in the UK and France. https://doi.org/10.1038/s41431-020-00798-2
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2020

Pfeifer Ulrich, Horn Ruth. Can there be wrongful life at the end of life? German courts revisit an old problem in a new context. https://doi.org/10.1136/medethics-2019-105883
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Horn Ruth. Law, public debates and professionals’ attitudes: a comparative study on the use of advance directives in England, France and Germany. https://doi.org/10.1007/978-3-030-40033-0_18
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Horn Ruth, Kerasidou Angeliki. Sharing whilst caring: solidarity and public trust in a data-driven healthcare system. https://doi.org/10.1186/s12910-020-00553-8
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Horn Ruth. The right to a self-determined death as expression of the right to freedom of personal development: the German Constitutional Court takes a clear stand on assisted suicide. https://doi.org/10.1136/medethics-2020-106197
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2019

Horn Ruth. La France et la Grande-Bretagne à l’ère de la médecine génomique: nouveaux défis éthiques en médecine de la reproduction. https://doi.org/10.1051/medsci/2019004
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2018

Kerasidou Angeliki, Horn Ruth. Empathy in healthcare: the limits and scope of empathy in public and private systems. https://doi.org/10.4324/9781315186351
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Horn Ruth, Parker Michael. Health professionals' and researchers' perspectives on prenatal whole genome and exome sequencing: 'we can't shut the door now, the genie's out, we need to refine it'. https://doi.org/10.1371/journal.pone.0204158
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2017

Horn Ruth, Parker Michael. Opening Pandora's box? Ethical issues in prenatal whole genome and exome sequencing. https://doi.org/10.1002/pd.5114
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Horn Ruth. The ‘French exception’: the right to continuous deep sedation at the end of life. https://doi.org/10.1136/medethics-2017-104484
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Horn Ruth. “Why should I question a patient’s wish?”: a comparative study on physicians’ perspectives on their duties to respect advance directives. https://doi.org/10.1163/15718093-12341437
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2016

Kerasidou Angeliki, Horn Ruth. Making space for empathy: supporting doctors in the emotional labour of clinical care. https://doi.org/10.1186/s12910-016-0091-7
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Gaille Marie, Horn Ruth. Solidarity and autonomy: two conflicting values in English and French health care and bioethics debates?. https://doi.org/10.1007/s11017-016-9391-7
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Horn Ruth, Kerasidou Angeliki. The concept of dignity and its use in end-of-life debates in England and France. https://doi.org/10.1017/s0963180116000050
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Gaille Marie, Horn Ruth. The role of ‘accompagnement’ in the end-of-life debate in France: from solidarity to autonomy. https://doi.org/10.1007/s11017-016-9389-1
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2015

Horn Ruth. Physicians’ perspectives on patient preferences and advance directives in England and France: other countries, other requirements?.
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2014

Horn Ruth. Advance directives in English and French law: different concepts, different values, different societies. https://doi.org/10.1007/s10728-012-0210-7
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Horn Ruth. “I don’t need my patients’ opinion to withdraw treatment”: patient preferences at the end-of-life and physician attitudes towards advance directives in England and France. https://doi.org/10.1007/s11019-014-9558-9
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2013

Huxtable Richard, Horn Ruth. Continuous deep sedation at the end of life: balancing benefits and harms in England, Germany and France. https://doi.org/10.1017/cbo9781139856652.010
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Horn Ruth, Huxtable Richard, Jox R. J.. European perspectives on ethics and law in end-of-life care.
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Horn Ruth. Le droit de mourir: choisir sa fin de vie, en France et en Allemagne.
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Horn Ruth, ter Meulen Ruud. The use of advance directives in the context of limited resources for healthcare. https://doi.org/10.1007/978-94-007-7377-6_12
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2011

Horn Ruth. Euthanasia and end-of-life practices in France and Germany: a comparative study. https://doi.org/10.1007/s11019-011-9357-5
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2010

Horn Ruth. Die Sterbehilfe-Debatte in Deutschland und Frankreich: Gesellschaftsproblem und sozialer Sachverhalt. https://doi.org/10.1007/978-3-531-92259-1_6
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Horn Ruth. Le débat sur l'euthanasie et ses répercussions sur les pratiques médicales en fin de vie, un regard comparatif: France - Allemagne. https://doi.org/10.3917/pos.414.0323
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2009

Horn Ruth. L’euthanasie en débat: la prise en charge des malades en fin de vie (une comparaison entre l’Allemagne et la France).
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Horn Ruth. Welche Art von Selbstbestimmung für sterbenskranke Patienten? Eine vergleichende Studie in Frankreich und Deutschland.
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2006

Horn Ruth, Saake Irmhild, Roser Traugott. Ein Überblick über den Verlauf der Sterbehilfe-Debatte in Frankreich.
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