Prof. Dr. Claudia Bozzaro: Precision Medicine: Opportunity or Risk for Vulnerable Groups
In her lecture titled “Precision Medicine: Opportunity or Risk for Vulnerable Groups?”, Professor Claudia Bozzaro, a medical ethicist at the Institute for Ethics, History and Theory of Medicine at the University of Münster, emphasized that precision medicine is not inherently just, it must be made just through conscious design. People living with rare diseases are considered particularly vulnerable, as they are often isolated and medically underserved.
But what happens when genetic differentiation leads to common diseases being divided into ever smaller subgroups? “If everything becomes rar, what does vulnerability even mean anymore?” asked Professor Bozzaro pointedly.
She advocated for redefining criteria for identifying those in need of protection, for example by considering disease severity, barriers to access, or opportunities for social participation.
Structural inequalities persist even in high-tech medicine: lack of trust, language barriers, cultural backgrounds, or past experiences of discrimination all hinder equitable access to research and care. Those who seek to implement precision medicine justly must first recognize and dismantle these obstacles.
“Precision medicine has great potential. But it must not benefit only those who are already privileged,” was Bozzaro’s powerful warning. Her reflections on human vulnerability served as a reminder that while it cannot be eliminated, it can inspire greater empathy and a stronger sense of responsibility.
A thoughtful and thought-provoking conclusion that made clear: medical progress requires ethical guidance and the willingness to share responsibility.
Insights into the individual sessions of the 9th Rare Disease Symposium can be found here:
Keynote: „Unlocking the Secrets of Rare Diseases: How Precision Medicine is Turning Discovery into Hope“
Session 1: Case Study Neuronale Ceroid-Lipofuszinose (NCL)
Session 2: Unlocking the Power of Data in Rare Diseases
Session 3: Spotlight Talks: Cutting-Edge Developments – Recognizing, Understanding and Treating Rare Diseases
Photos: Andrea Katheder
We extend our heartfelt thanks to our partners for their financial support: Pfizer Pharma GmbH, Takeda Pharma Vertrieb GmbH & Co. KG, Sanofi-Aventis Deutschland GmbH, Alexion Pharma Germany GmbH, Chiesi GmbH, Ipsen Pharma GmbH, UCB Pharma GmbH, and PTC Therapeutics Germany GmbH.
