Ruth Horn

Ruth Horn is Professor of Medical Ethics at Augsburg University's Institute for Ethics and History of Health in Society (IEHHS). She is an Associate Professor at the Ethox Centre, Oxford University. Her research focuses on the ethical issues raised by new biomedical technologies in different socio-cultural and political contexts (notably in France, Germany and England). Currently, Ruth Horn is particularly interested in the ethical issues raised by data-driven health technologies - with a particular focus on genomics and prenatal genetic testing. She is also leading a UK ESRC-funded project on the ethical issues of NIPT in England, France and Germany, as well as a DFG-funded project on the ethical issues of cystic fibrosis screening in Germany and Israel.

The project

Title: The Value(s) of Genomics. A case study of France, England and Germany

"The development of genomic medicine has the potential to make important contributions to society. The promise is to significantly improve health, and drive science, innovation and economy. To advance the implementation of genomics into routine clinical care, large national genomic initiatives have been created, among other countries, in France, England and Germany collecting, managing and analysing large scale genomic datasets to realise the genomic project. While there are many promises and hype in genomics, there is little in-depth evaluation of the effective value of genomics for society from a variety of perspectives. Such an evaluation is important as, if the promises of genomics are not or cannot be realised, the current hype can have a number of negative effects on society such as misinformed expectations and subsequent deception, decline of public trust, unreasonable distribution of public resources, and misinformed policies. This project proposes a critical analysis of the contributions genomic research and medicine makes to society at large at various levels: economic, societal, individual, clinical and population. In order to achieve this, its objectives include the identification of key-stake holders at these various levels, their perceptions of the value of genomics and criteria used to evaluate this value. The results will inform recommendations for governance of genomic medicine and research."

Hosting institution: Centre d'Études et de Recherches de Sciences Administratives et Politiques (CERSA

Selective Bibliography

• R. Horn, J. Merchant, The UK-FR+GENE Consortium, Ethical and social implications of public–private partnerships in the context of genomic/big health data collection, European Journal of Human Genetics, 2024, doi: 10.1038/s41431-024-01608-9.
• Bowman-Smart, H., Perrot, A., Horn, R. Supporting patient decision-making in non-invasive prenatal testing: a comparative study of professional values and practices in England and France. BMC Med Ethics 25, 34 (2024).
• Perrot, A., Clarke, A., Vassy, C., & Horn, R. Women's preferences for NIPT as a first-line test in England and France: Challenges for genetic counseling practices. Journal of Genetic Counseling, 00, 1–11 (2023).
• Raz, A., Minari, J., Takashima, K., Gaydarska, H., Hashiloni-Dolev, Y., Horn R. Old and new challenges regarding comparable and viable data sharing in population-scale genomic research. Eur J Hum Genet (2023).
• Horn, R., Merchant, J. & The UK-FR GENE Consortium. Managing expectations, rights, and duties in large-scale genomics initiatives: a European comparison. Eur J Hum Genet (2022).