GHGA is looking for people interested in topics around the storing and processing of human genetic data to participate in a focus group.
You are interested in the secure and effective use of data in medical research? You want to help with preparing scientific communication for the public?
For the participation in a focus group, GHGA is looking for people from 18 years who are interested in topics around the storing and processing of human genetic data. The focus group will discuss the draft of a website addressing both persons affected by cancer or a rare disease, and the interested public. Specifically, the website covers topics around research with human genetic data including its opportunities and risks for patients.
GHGA is a consortium of research institutions and clinics in Germany with the task of establishing a research portal for human genetic data. The aim is to enable an easy, fast and controlled exchange of data between research institutions. Analysing genetic data holds great potential for the diagnosis and treatment of cancer and rare diseases. It enables personalised medicine based on individual genetic predispositions.
With the focus group GHGA aims to learn about the perspectives and communicative needs of interested persons on genomic research. The insights will be used to customize the website accordingly.
The discussion will last between two and three hours, and take place either in person in Heidelberg or virtually. For evaluation purposes, the session will be recorded in full compliance to applicable data security regulations. The engagement will be compensated and travel expenses will be reimbursed.
For more information, please find here the full call document including the link to the registration questionnaire. As the focus groups will be held in German language, all further information materials are accordingly.