Modern genomic testing opens up new possibilities for diagnosis and prevention, but at the same time raises ethical, legal, and societal questions. The Generation Genom project provides young people with scientifically sound knowledge about the opportunities, limitations, and risks of genetic testing and promotes the responsible use of genetic information. To this end, an interdisciplinary team drawing on human genetics, medical ethics, psychology, and science communication is developing digital formats such as short videos, podcasts, and interactive livestreams. The project is being evaluated through a companion social science study that examines how the target audience perceives the offerings and what impact they have on knowledge, attitudes, and the reflective handling of genetic information. The goal is to present complex content in an accessible way and to foster dialogue between the scientific community and the public about the future of genomic medicine.

Generation Genome Website

IMDE Contact Person

Dr. Katja Mehlis

When it comes to public health research and policy, children and young people are often under-represented. On the one hand, this is because they are frequently excluded from political decision-making (participation), even though, under the UN Convention on the Rights of the Child, they have a right to participate, including in health matters and public health policies, and they do not have their own lobby. On the other hand, their needs – in their diverse physical, psychological, social, emotional and cognitive dimensions – differ from those of adults depending on their stage of development, and this introduces a certain degree of complexity. Depending on their stage of development, their autonomy – or ability to determine for themselves what is in their best interests – also varies, as do the requirements for shaping their participation.

Within this framework, we are currently examining questions relating to the ethical aspects of, and the foundations for, public health policy for children and young people: What rights do children and young people have with regard to health? What duties and responsibilities do the state, parents, society and also businesses have towards children? For example, should children be targeted by advertising for unhealthy foods? What rights to participation do children and young people have, and how should participation be structured to suit different stages of development? In which areas of public health relating to children and young people is further research still needed? Above all, what is the situation regarding the mental health of children and young people? And finally, the overarching question: based on current research, what public health initiatives and topics would be desirable for children and young people?

Publications

Jungkunz M, Schickhardt C.: Ethics of genomic newborn screening – a child centered public health framework, Ethik in Medizin, 37, 331–359, 2025. DOI:10.1007/s00481-025-00867-4

Schickhardt, C.: Children under Covid-19 policy: victims of the system, waves and peaks. A contribution to the debate; In: Early Childhood, Vol. 24, 02/2021.

Schickhardt C.: The best interests of the child as a decision-making criterion in medicine. In: Ludwigshafener Ethische Rundschau, No. 1, 19–24, 2017.
Lectures (selection)

Schickhardt C.: Eating Disorders in Minors and the Role of the Media. An Ethical Investigation, In: Justice, Education and the Politics of Childhood. Challenges and Perspectives, hrsg. von Drerup, J., Graf, G./Schickhardt, C./Schweiger, G., Springer, 65-86, 2016.

8 May 2025 Keynote lecture: The rights and welfare of children as patients and citizens – a child ethics perspective, 17th Annual Conference of the German Society for Child Protection in Medicine (DGKiM), Ernst-von-Bergmann-Klinikum, 7–9 May 2026, Potsdam.

25 April 2026 Mental Health in Children and Adolescents: Ethical Aspects, Frankfurt Forum – Spring Conference 2026: Intergenerational Care II: Care for Children and Adolescents – Are We Well-Prepared for Tomorrow?, 24–25 April 2026, Fulda.

10 October 2025 Ethics of genomic newborn screening – Approaches to child-centred public health ethics, Jungkunz M, Schickhardt C, AEM Annual Conference 2025, 9–11 October 2025, Munich.

24.06.2025 Eröffnungsvortrag: The rights and well-being of children with disabilities, IAACD & EACD Kongress 2025, Alte Aula, Universität Heidelberg.

9 October 2025 (No) Right to Health? Children in Public Health, Schickhardt C, Schweer J, Winkler EC, AEM Annual Conference 2025, 9–11 October 2025, Munich.

IMDE Contact PArtners

Dr. Christoph Schickhardt

Niamh Sulzbach
 

We examine the ethical aspects of the COVID-19 pandemic as they relate to children and young people. During the COVID-19 pandemic, children and young people were only recognised as an affected group at a late stage. They were not involved in decision-making, and it was not until later that, for example, the psychological consequences of school closures and isolation for children and young people were taken into account. To this day, there has been a near-total lack of public critical reflection on this issue from the institutions that played a key role in providing scientific policy advice at the time, such as the Leopoldina (Dr. Christoph Schickhardt writes more on this here). We are therefore reflecting on these and other aspects of the health and rights of children and young people during and after the pandemic from an ethical perspective.

Publications

‘Not Systemically Relevant: A Review of COVID-19 Policy from a Child Ethics Perspective’, Suhrkamp Verlag, Berlin, 2024. [This book was also published as a special edition by the Federal Agency for Civic Education, Bonn 2025; Series, Vol. 11192]

Schickhardt C.: Coming to terms with the past without looking back? Guest article, in: Frankfurter Allgemeine Zeitung, online, 2 December 2025.

Schickhardt C., Interview in the Frankfurter Allgemeine Zeitung, ‘Evidence is only part of the picture’, with Joachim Müller-Jung, online, 3 December 2025.

Schickhardt C., Interview in the Tagesspiegel (Background), ‘Children and Covid-19: Indifference and distance created, by Heile Haarhoff, June 2024.

Schickhardt C., Interview in the Stuttgarter Zeitung, ‘There were massive violations of children’s rights’, conducted with Lisa Welzhofer, No. 122, p. 14, May 2024.

Schickhardt C., Interview in Chrismon: Lessons from the Covid-19 pandemic: Can parents vote on behalf of their children? By Nils Husmann, 18 April 2024.

Schickhardt C.: Injustice as a system. […] Children as the big losers of the pandemic […]. In: Frankfurter Allgemeine Zeitung, p. 9 (lead feature in the arts and culture section), 23 February 2021.

Presentations (selection)

24 April 2026, Children and young people in COVID-19 policy. An ethical critique, session on reviewing the COVID-19 pandemic, Council of the Evangelical Church in Germany, online.

12 March 2026, Organised complacency? How the scientific community (does not) review its actions during the COVID-19 pandemic, ‘Scientism’ lecture series, online.

10 October 2025, Ethics of genomic newborn screening – Approaches to a child-centred public health ethics, Jungkunz M., Schickhardt C., AEM Annual Conference 2025, 9–11 October 2025, Munich.

22 October 2024, Not systemically relevant? Children’s rights in theory and practice, Schickhardt C., lecture as part of a lecture series at Magdeburg-Stendal University of Applied Sciences, ‘Children’s Rights in Practice! How to successfully implement children’s rights’, Magdeburg-Stendal University of Applied Sciences.

26 June 2024, ‘Children and young people – the big losers of the COVID-19 pandemic?’, C. Schickhardt, lecture as part of the ‘Medicine in Dialogue’ series, Institute for the History, Theory and Ethics of Medicine, JLU Giessen, Centre for Psychiatry, lecture theatre, Klinikstraße 36, Giessen.
 

IMDE Contact Partners

Dr. Christoph Schickhardt

Niamh Sulzbach

NEW_LIVES Genomic Newborn Screening Programmes – Legal Implications, Value, Ethics and Society

Since the late 1960s, virtually all newborns in Germany have been standardly tested for a number of rare but severe diseases, since a timely diagnosis and treatment of these diseases significantly improves their prognosis. Thousands of young patients have profited from Germany’s newborn screening program. In part, its success is also due to the program’s continued development, which led to the inclusion of further target diseases and new methods of analysis. The maturation of new genomic technologies now offers the opportunity to expand newborn screening once again and in particularly significant ways. At the same time, such an expansion would come with considerable medical, ethical, legal, and social challenges.

Is genomic newborn screening (gNBS) a reasonable option for Germany? How can we realize the significant health benefits offered by the new technologies and at the same time minimize potential risks for everyone involved? Our interdisciplinary research group “NEW_LIVES: Genomic NEWborn Screening Programs – Legal Implications, Value, Ethics and Society” aims to address these questions. Generously funded by the German Federal Ministry of Research, Technology and Space, NEW_LIVES joins researchers from five different disciplines at Heidelberg University Hospital, the Heidelberg University Faculty of Medicine, and the University of Mannheim and is carried out in close consultation with representatives of patient organizations.

For further information, please visit our website: NEW_LIVES: Genomic Newborn Screening Programmes

Contact

• Prof. Dr med. Dr phil. Eva C. Winkler (Project Lead)
• Karla Alex (Project Coordination; Research Associate in the Ethics Sub-project):
  karla.alex(at)med.uni-heidelberg.de
  T: +49 6221 56-37216

Funding

Federal Ministry of Research, Technology and Space (BMFTR; formerly BMBF), Health Research Framework Programme, Funding for research projects on ethical, legal and social aspects in the life sciences (2022–2025; 36 months)

Project group (participating institutions and researchers)

Heidelberg University:

• Section for Translational Medical Ethics, National Centre for Tumour Diseases, Department of Medical Oncology, Heidelberg University Hospital, Heidelberg University, Im Neuenheimer Feld 460, Heidelberg 69120, Germany
  Prof. Dr med. Dr phil. Eva C. Winkler
  Research Associates: Karla Alex; Sascha Settegast, MA
   
• Institute of Medical Psychology, Heidelberg University Hospital, Heidelberg University, Germany
  Prof. Dr. phil. Beate Ditzen
  Research Associates: Dr. phil. Julia Mahal; MSc Psych. Seraina Lerch; Psych. Elena Sophia Doll (doctoral student)
   
• Institute of Human Genetics, Heidelberg University Hospital, Heidelberg University, Germany
  Prof. Dr med. Christian Schaaf
  Scientific Research Associate (Physician Scientist): Dr Nicola Dikow
   
• Division of Child Neurology and Metabolic Medicine, Centre for Paediatric and Adolescent Medicine, Heidelberg University Hospital, Heidelberg University, Germany
  Prof. Dr. med. Stefan Kölker
  Scientific Research Associate (Physician Scientist): PD Dr. med. Ulrike Mütze

University of Mannheim:

• Institute of German, European and International Medical Law, Health Law and Bioethics (IMGB) of the Universities of Heidelberg and Mannheim; Chair of Public Law, Law of Economic Regulation and Media, Department of Law, University of Mannheim Prof. Dr Ralf Müller-Terpitz, Research Associate (Doctoral Student): Hannah Straub
• International Advisory Board (Patient Representatives, Partner Project, Affiliated Researchers)

Representatives of Patient Groups:

• Tobias Hagedorn (Patient Representative, German Interest Group for Phenylketonuria and Related Metabolic Disorders, DIG PKU);
• Henriette Högl, Annette Mund (Patient Representatives, German Children’s Network, Kindernetzwerk e.V.)

Partner Project, USA:

• Jonathan Berg (UNC School of Medicine, NC NEXUS)

Affiliated Researchers:

• Vincent Heuveline (Head of the Engineering Mathematics and Computing Laboratory, Heidelberg University; Chief Information Officer of Heidelberg University; Director of the Computing Centre);
• Georg F. Hoffmann (Medical Director of the Department of General Paediatrics, Neuropaediatrics, Metabolism, Gastroenterology and Nephrology, Heidelberg University; Spokesperson for the Screening Commission, German Society for Paediatrics and Adolescent Medicine);
• Gerrit Hornung (Head of the Department of Public Law, IT Law and Environmental Law, University of Kassel);
• Josephine Johnston (Director of Research, The Hastings Centre);
• Jan Korbel (Head of Data Science and Group Leader at the European Molecular Biology Laboratory);
• Maximilian Muenke (Chief Executive Officer, American College of Medical Genetics and Genomics, Newborn Screening Translational Research Network);
• Christian Netzer (Head of Clinical Human Genetics and Molecular Genetic Diagnostics, University of Cologne; Spokesperson for the Commission on Fundamental Principles and Ethical Issues, German Society of Human Genetics);
• Christoph Rehmann-Sutter (Deputy Director, Institute for the History of Medicine and Science Studies, University of Lübeck)
• Jochen Taupitz (Director, Institute for German, European and International Medical Law, Health Law and Bioethics, Universities of Heidelberg and Mannheim)