Examining Trust in Medical Research Data Infrastructures

Photo of a young woman in a red shirt sitting across a table from the camera.

Medical research data infrastructures such as GHGA enable the secure sharing and reuse of sensitive health and genomic data for research. To ensure their long-term success, understanding factors that influence trust and societal acceptance is essential. 

As part of GHGA, we are conducting an interview study at the Institute for Medical and Data Ethics in Heidelberg, for which we are seeking interested participants from the research community or those with ties and expertise to policy and regulation.

About the study

The study aims to identify factors that influence trust in and acceptance of medical research data infrastructures and archives. It examines perceptions of these infrastructures and aims to identify factors that either foster or hinder trust in the context of sharing and processing human health and genomic data. 

The project also hopes to contribute to the sustainable development and establishment of medical research data infrastructures. This is particularly important given that the relevance of medical research data infrastructures for health research is growing steadily. Furthermore, the study aims to highlight the societal significance of digital genome archives in a historical and political context with a focus on sustainability.

Why your participation matters

The project aims to broaden existing knowledge and generate new insights. Your experience and knowledge play a key role in this. By participating, you actively contribute to expanding empirical and theoretical knowledge related to secondary research using genomic data. It will also be possible to gain important new insights into patients’ needs and regarding trust and acceptance, which will help to close gaps in knowledge and address analytical shortcomings.

All details at a glance

  • Who? Patients, Researchers as well as experts regarding governance, regulations or research data infrastructures
  • Subject: Trust and Acceptance of Medical Research Data Infrastructures and the Sharing of Genomic Data
  • Format: individual interview (in German, offered online)
  • Duration: 45-60 minutes
  • Organized by: Institute for Medical and Data Ethics, Heidelberg University (in the context of GHGA)
  • Why participate? Share your experiences and help us better understand and strengthen trust in research using genomic data
  • Interested? Contact Mathilda Weeke via e-mail or phone