New information portal: „Meine Genomdaten. Teilen und Helfen“

With „Meine Genomdaten. Teilen und Helfen“, a new information portal from GHGA has gone live to help people answer the question: Should I make my genetic data available for research?

The website is aimed at patients, their relatives and anyone else who would like to learn more about how sharing genetic data works and what issues are involved.

The aim is to help people develop their own informed views on the subject.

Navigating a complex topic

Genetic data can help us understand diseases and gain new medical insights. At the same time, using this data raises many questions: How is my data protected? Who uses it? And what does a decision mean for me and my family?

The website tackles these questions and explains the most important basics in clear, everyday language. It provides a step-by-step introduction to the topics of genome medicine and research, and highlights the importance of data sharing for medical progress.

Starting with three key topics

The website guides visitors step by step through key questions, organised into three main sections:

  • Genome medicine. How genetic information can help to diagnose diseases more accurately and tailor treatments more precisely.
  • Genome research. How new medical knowledge emerges from vast amounts of individual data, and why research relies on the participation of many people.
  • Sharing genomic data. What it actually means to share data, how it is protected, and what considerations may be important for those affected.

This content is supplemented by background information, a glossary and the GHGA podcast series.

Jointly developed with real-life questions in mind

The website’s content was developed as part of GHGA and discussed in focus groups with patients and their relatives. Their experiences and feedback have played a key role in refining the content, making it easier to understand, and aligning it more closely with the questions that arise in real-life decision-making situations.

A contribution to informed decision-making

Well-informed consent is an important foundation for research and healthcare. When people understand what it means to share their data, it can help to build trust.

With its new information portal, GHGA aims to make knowledge accessible in an understandable way and to provide guidance on a complex subject.