Dr. Ruth Horn (Associate Professor, Oxford)
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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.
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.
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 Medicineat 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:
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’.
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 and Fellowships
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.
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.
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.
Memberships and Responsibilities
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.
R. Horn, et al., The ethics of genomic medicine: redefining values and norms in the UK and France. UK-FR GENE Position Paper, European Journal of Human Genetics, 2021, doi: 10.1038/s41431-020-00798-2.
R. Horn, A. Kerasidou, Sharing whilst caring: solidarity and public trust in a data-driven healthcare system, BMC Medical Ethics; 21, 2020, doi: 10.1186/s12910-020-00553-8.
Z. Ye, […] R. Horn, H. H. Uhilg, Predictive prenatal diagnosis for infantile-onset inflammatory bowel disease due to interleukin-10 signalling defects, J Pediatr Gastroenterol Nutr, 2020 Sep 9, doi: 10.1097/MPG.0000000000002937.
R. Horn, 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, Journal of Medical Ethics, 2020, doi: 10.1136/medethics-2020-106197.
U. Pfeiffer, R. Horn, Can there be Wrongful Life at the End of Life? German Courts Revisit an Old Problem in a New Context, Journal of Medical Ethics, 2020, doi: 10.1136/medethics-2019-105883.
R. Horn, France and Great-Britain at the age of genomic medicine: new ethical challenges in reproductive medicine (in French), Special Issue: Loi de bioéthique et Etats généraux 2018-2019, Médecine/Sciences, 2019, doi: 10.1051/medsci/2019004.
R. Horn, M. Parker, 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'. PLoS ONE, 2018;13(9): e0204158.
R. Horn, The ‘French exception’: The right to continuous deep sedation at the end of life. Journal of Medical Ethics, 2018; 44:204–205.
R. Horn, M. Parker, Opening Pandora's box?: ethical issues in prenatal whole genome and exome sequencing. Prenatal Diagnosis, 2018;38(1):20-25
R. Horn, “Why Should I Question a Patient’s Wish?” A Comparative Study on Physicians’ Perspectives on Their Duties to Respect Advance Directives, European Journal of Health Law, 2016;24.
M. Gaille, R. Horn, The role of ‘accompagnement’ in the end-of-life debate in France: From solidarity to autonomy, Theoretical Medicine and Bioethics, 2016;37(6).
M. Gaille, R. Horn, Solidarity and Autonomy - Two conflicting values in English and French health care and bioethics debates?, Editorial Special Issue, Theoretical Medicine and Bioethics, 2016;37(6).
A. Kerasidou, R. Horn, Making space for empathy: supporting doctors in the emotional labour of clinical care, BMC Medical Ethics, 2016;17(8), doi: 10.1186/s12910-016-0091-7.
R. Horn, A. Kerasidou, The concept of “dignity” and its use in end-of-life debates in England and France, Cambridge Quarterly of Healthcare Ethics, 2016;25(3).
R. Horn, “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, Medicine, Healthcare and Philosophy, 2014;17(3):425-35.
R. Horn, La situation allemande à l’égard de l’assistance médicale au suicide : Jusqu’où peut-on respecter la volonté du patient ?, Bioethica Forum, 2014;4:144-145.
R. Horn, Advance directives in England and France: Different Concepts, Different Values, Different Societies, Health Care Analysis, 2012;22(1):59-72.
R. Horn, Euthanasia and end-of-life practices in France and Germany. A comparative study, Medicine, Healthcare and Philosophy, 2011;16(2):197-209.
R. Horn, Le débat sur l’euthanasie et ses répercussions sur les pratiques médicales en fin de vie. Un regard comparatif: France – Allemagne (The Debate about Euthanasia and its Echo on End-of-Life-Practices), Revue Pratiques et Organisation des Soins, 2010;4:323-330.
R. Horn, Le débat sur l’euthanasie: Quelle autonomie pour un patient en fin de vie? Etude comparative sur la prise en charge des malades en fin de vie en France et en Allemagne (The debate on euthanasia: Which autonomy for an end-of-life patient? Comparative study of end-of-life-practices in France and in Germany), La vie des idées, Collège de France: http://www.laviedesidees.fr/, April 14, 2009.
R. Horn, Welche Art von Selbstbestimmung für Sterbenskranke Patienten? Eine vergleichende Studie in Frankreich und Deutschland (What kind of autonomy for dying patients? Comparative study in France and in Germany), Zeitschrift für Medizinische Ethik, 2009;4:333-342.
R. Horn, I. Saake, T. Roser, Die Französische Antwort: Ein Überblick über den Verlauf der Sterbehilfe-Debatte in Frankreich (The French Answer: Appraising the Euthanasia debate in France), Zeitschrift für medizinische Ethik, 2006, 3:281-295.
R. Horn, Le droit de mourir: Choisir sa fin de vie en France et en Allemagne, Presses Universitaires de Rennes, coll. Essais de Sociologie, 2013.
R. Horn, Law, public debates and professionals’ attitudes. A comparative study on the use of ADs in England, France and Germany, in N. Emmerich et al. (eds.), Contemporary European Perspectives on the Ethics of End of Life Care, Springer, 2020.
A. Kerasidou, R. Horn, Empathy in healthcare: the limits and scope of empathy in public and private systems, in T. Feiler et al. (eds.), Marketisation, Ethics and Healthcare. Policy, Practice and Moral Formation, Routledge, 2018.
R. Horn, Physicians’ Perspectives on Patient Preferences and Advance Directives in England and France: Other Countries, Other Requirements?, in R. Huxtable and R. ter Meulen (Eds.), The Voices and Rooms of European Bioethics, Routledge, 2015.
R. Horn, R. ter Meulen, Advance directives in the context of limited resources for health care, in N. Biller-Andorno S. Brauer and P. Lack (Eds.), Advance Directives: ethical issues from an international perspective, International Library of Ethics, Law, and the New Medicine, Springer, 2013;54:181-192.
R.J. Jox, R. Horn, R. Huxtable, European Perspectives on Ethics and Law in End-of-Life Care, in J.L. Bernat and H.R. Beresford (Eds.), Ethical and Legal Issues in Neurology, Handbook of Clinical Neurology, Elsevier, 2013;118:155-65.
R. Huxtable, R. Horn, Continuous sedation at the end of life: Balancing benefits and harms in England, Germany and France, in S. Sterckx, K. Raus and F. Mortier (Eds), Continuous sedation at the end of life: Ethical, clinical and legal perspectives, Cambridge University Press, 2013;0:160-176.
R. Horn, Das Recht auf Selbstbestimmung des Todes als Gesellschaftsproblem und als soziologisches Forschungsobjekt (The right to determine death as a social problem and sociological object), in Frankreich Jahrbuch2009, Wiesbaden, Verlag für Sozialwissenschaften, 2010:77-93.