Accepted Paper:

Information management meets 'data hugging' in the digital age  

Author:

Aaro Tupasela (University of Copenhagen)

Paper short abstract:

This presentation will look at 'data hugging' practices as a challenge for data driven medicine.

Paper long abstract:

Data-driven medicine has been hailed as the next new frontier in which major new breakthroughs are expected in relation to the development of personalized medicine. An interesting feature in relation to the mobilization of big data is the surprising fragmentation that exists between different types and domains of data on humans, ranging from patient healthcare records to population based biobank cohorts to national data registers on cancer incidence. Recent efforts in a number of countries and regions, such as the EU to mobilize these resources seek to facilitate better access and increased use of such information. Given the fragmentation of these systems, there remains a curious challenge which has been identified already a decade ago relating to samples and information; collections and information are not neutral, but rather come with political, strategic and economic interests which may impact the ways in which information and samples can be used (cf. Hoeyer, 2007).

Drawing on interviews and research conducted as part of the Global Genes, Local Concerns project at the University of Copenhagen, this presentation will examine how the term 'data hugging' has come to represent a particular type of problem in relation to gaining access to samples and data in both large prospective cohorts (LPC), as well as in the Danish health care sector. I will argue that despite policies relating to sharing large data sets and tissue samples across domains to serve as the basis for data driven medicine, there remain numerous hurdles which remain unattended to in relation to recognition of rights and entitlements.

Panel T021
Bioinformation management in data driven medicine