KRAS (Keman – Recht auf Selbstbestimmung) is organising,
in collaboration with Artemisia and the Stadtteilzentrum (STZ) Adalbertstraße,
the event:
Ethics vs. self-determination – Who really decides?
Decision-making processes in medicine: the case of trisomy 18
Date: Thursday, May 7, 2026
Time: 18:30-20:30
Location: Stadtteilzentrum Adalbertstraße
Address: Adalbertstr. 23A, 10997, Berlin
- Abstract
A prenatal diagnosis of a life-limiting condition—such as trisomy 18—confronts families with decisions of profound significance. While public debates often emphasize self-determination, many affected families report a different experience: medical decision-making processes can appear already strongly structured. The event “Ethics vs. Self-Determination – Who Really Decides?” invites participants to reflect on this tension. Bringing together perspectives from medicine, medical ethics, midwifery practice, and the lived experiences of families, the evening explores how decisions around rare diagnoses are shaped and under which conditions genuine self-determination is possible. The aim is to create a space for dialogue, mutual learning, and a respectful discussion across professional and personal perspectives.
Short bio of the organizer and moderator
Dr Elettra Griesi is a sociologist and researcher at the Institute of Sociology at the Technical University of Berlin (TU Berlin), with an interdisciplinary background in cultural anthropology and architecture. Her research focuses on social inequalities and minorities, using qualitative and participatory methods. As the mother of a son with trisomy 18, her approach to the topic is both scientific and personal. Since 2020 she has been working with a network of families with children with trisomy 18 and 13, analysing recurring patterns in medical decision-making processes. This work led to the research project emPOWERment at the Catholic University of Applied Sciences Berlin (KHSB), which she coordinated. She is currently founding, together with other parents, KRAS (Keman – Right to Self-Determination), an association aimed at strengthening parental autonomy in the context of rare diagnoses.
Contributors to the evening
Prof. Dr. Georg Marckmann (medical ethicist, LMU Munich)
Prof. Dr. Georg Marckmann is Professor of Ethics, History, and Theory of Medicine at LMU Munich. His work focuses on ethical decision-making in clinical practice, end-of-life conflicts, and issues of distributive justice in healthcare. As a member of the Central Ethics Committee of the German Medical Association, he brings many years of experience in evaluating medical guidelines and decision-making processes. In 2024, he was elected to the National Academy of Sciences Leopoldina.
Prof. Dr. Oliver Muensterer (Director of the Department of Pediatric Surgery, LMU Munich)
Prof. Dr. Oliver Muensterer is Professor of Pediatric Surgery at LMU Munich and Director of the Pediatric Surgery Clinic at Dr. von Hauner Children’s Hospital in Munich. He previously headed the Department of Pediatric Surgery at the University Medical Center Mainz. His focus includes minimally invasive surgery and the treatment of congenital malformations in premature and newborn infants. In his work, he combines medical expertise with family-oriented care and is committed to transparent counseling and quality-assured clinical standards.
Karina Jussios (midwife)
Karina Jussios has been working as an independent midwife since 1997 and has extensive experience supporting women and families in complex life situations. After completing her clinical training at Neukölln Hospital, she has also been actively involved for many years in a mother-and-child facility. In her work, respectful, individualized, and open-ended counseling is central—especially in cases of difficult prenatal diagnoses. Her aim is that every woman and every family—regardless of social status, educational background, or ethnic origin—receives the best possible care and guidance. The goal of her work is to accompany families so that they can make sound and truly self-determined decisions.
Victoria Karampinis (mother of Zoë)
Victoria is the mother of a three-years old daughter born with trisomy 18 and advocates for fair and individualized medical care. She has organized events addressing ethical questions surrounding prenatal diagnostics, most recently titled “What Is Ethically Justified?” (March 18, 2026). She participated in the emPOWERment research project and is among the founding members of KRAS. She was also featured in the ARD podcast “Silent Birth and Happy Mother of a Daughter with Trisomy 18.” Her goal is to challenge blanket assumptions and promote that every child be regarded as an individual in medical decision-making processes.
Melanie Skora (mother of Mia)
Melanie is the mother of three children, including Mia, a six-years old daughter, who lives with trisomy 18. Her experiences with medical decision-making processes have motivated her to advocate for greater transparency, respectful communication, and genuine involvement of families. She is actively engaged in supporting other affected parents and also brings her perspective into the public sphere. She participated in the emPOWERment research project and is among the founding members of KRAS. In several media contributions (including SWR and RTL), she has shown that a diagnosis of trisomy 18 does not exclude a fulfilling family life and that medical prognoses must be considered in a differentiated way.
Jana Kühnemann (mother of Luna-Yulé)
Jana is the mother of five children, including Luna-Yulé, who is eight years old and was born with trisomy 18. Since her pregnancy, she has engaged with questions of ethics, death, and self-determination—and with the broader societal question of which lives are considered “worth living.” She is also publicly committed to promoting greater understanding and has shared her experience in a feature on the ZDF Morgenmagazin and through the blog “Luna’s journey”. She has also shared her perspective as a mother within the emPOWERment research project and is a member of the KRAS association. Jana advocates for parents to receive open and comprehensive information about all available options—and poses a question that continues to accompany her: who actually decides what “being viable” means?
Description of the event
A prenatal diagnosis of a life-limiting condition—such as trisomy 18—confronts families with decisions of profound significance. Within a short period of time, they must respond to questions that fundamentally change the life of their child and their own lives.
In public debate, self-determination is frequently invoked. However, many affected families describe a different experience: the decision-making process sometimes appears to be shaped even before an open discussion with medical professionals begins. Some options are considered more readily than others, while others remain at the margins. As a result, families may gain the impression that, in the case of certain diagnoses, the course ahead is already largely predetermined.
Rare diagnoses (such as trisomy 18) fall outside established medical routines. Prognoses are uncertain, clinical trajectories vary widely, and experience is limited. Precisely where knowledge is inconclusive, guidelines, professional assessments, and medical evaluations gain particular weight. They provide orientation, but at the same time shape the space for decision-making.
This raises a central question:Who truly decides?
When an intervention is described as “ethically unjustifiable,” when reference is made to a low probability of survival, or when a palliative approach is presented as the default option, these are not merely medical assessments. They are normative framings. For families in a highly vulnerable situation, such framings can significantly shape the scope of action available to them — often without this being consciously intended.
At the same time, medical professionals operate under considerable pressure: limited resources, liability concerns, clinical experience, and the responsibility to prevent suffering. Decisions are never made in a vacuum. They are embedded in institutional logics and in broader societal assumptions about which lives are considered viable — and which are not.
It is precisely here that ethics and power intersect.
If self-determination is a core principle of modern medicine, then we must ask under what conditions it is truly possible. When is autonomy genuinely enabled? And when is it — perhaps unintentionally — constrained?
Using trisomy 18 as a case in point, this event invites critical reflection on a tension that affects us all:
– How do medical systems structure decision-making in the context of rare diagnoses?
– Which ethical principles come into conflict?
– Where does a gap emerge between legally guaranteed self-determination and lived practice?
– And what is needed to ensure that families experience genuine freedom of choice?
Behind every guideline stands a specific child.
And behind every decision, a family.
Language
German
REGISTRATION
Registration via Eventbrite is required to participate in the event.