More data, more issues: the ReDaPeD project

Towards responsible data management for personalised diagnostics: interconnected datacultures in life science, medicine and society (ReDaPeD)

Duration: October 2012 - present. 

SUMMARY
The combination of an increasing sense of the genetic foundations of disease and the technological possibilities to sequence (map the sequence of the DNA bases) a genome quickly, take us further forwards to personalized diagnostics. Personalized diagnostics is about the mapping of the genetic characteristics of an individual patient for a very specific diagnosis. This offers possibilities to, for example, make an analysis of the treatment with the best chances of success – genetic factors play a big part in whether or not a treatment method ‘catches on’. The application does not end with just clinical diagnostics. Some healthy citizens are also interested in, and via commercial tests capable of drawing up a personal risk profile.  

Personalized diagnostics asks for great amounts of data. At the same time, these data streams bring along many questions. Technical questions: how to make sure that reliable and useful information is retrieved from the data, but also questions about access, storage, usage, say and security. Sharing data is important for scientific research, but not always in the best interest of individual researchers. Doctors often want to protect their patients, while some patients want their data to be used as much as possible. Who is allowed to do what with which data? For which purposes? Who should decide on this? What to do with clinical information that wasn’t searched for? Can patients arrange access to their own data?  

The researchers on this project take the diagnostic application of Next Generation Sequencing as a case study to explore the possibilities for collaboration between scientists, clinicians, legal experts, ethicists, patients and other stakeholders to realize responsible management of data in light of blurring boundaries between research and care.  

The project has started with a kick-off meeting on October 1st 2012. A full report of this meeting as well as a summary are available as PDF. 
A report based on interviews with a number of major Dutch stakeholders is also available in PDF.
On June 17 2013, a wide range of stakeholders was assembled in the workshop ‘From DNA to personal health record’. A full report and a summary for this meeting can also be accessed in PDF through this website.