Altered storage of genomics data

A wealth of data? Blurring boundaries and user-roles at the interface of genetic, medical and personal information

RESEARCH QUESTIONS 

  1. How does the collection, storage and use of genomics data imply, involve and affect various types of users, including donors, research participants, patients and citizens?
  2. Which roles are enabled, enforced or inhibited in various governance arrangements for such ‘users’ in the collection, storage and use of genomics data?
  3.  How can users be meaningfully involved in democratic governance arrangements for the collection, storage and use of genomics data?

Duration: October 2010 - August 2013.  

SUMMARY
The project ‘A wealth of data?’ combined qualitative and quantitative social science research methods to investigate the transgression of boundaries and the dynamics of user-roles in the collection, storage and use of genetic, medical and personal data and information for research purposes (biobanking). Rather than on researchers or professional users, the project has focused on donors, research participants, patients and/or citizens as (prospective) users or beneficiaries of biobanking. 

The project included two case studies of (plans for) biobanking initiatives in the Netherlands:  

  1. the ongoing discussion among Dutch researchers and policy makers on the possibility of prolonged storage and extended use for research purposes of dried blood spots from the neonatal screening programme; 
  2. the Parelsnoer (String-of-Pearls) Institute, a collaboration by Dutch University Medical Centers to integrate clinical biobanks for particular medical conditions. 

In the first case study, a web survey completed by 1600 Dutch parents has provided extensive data about their knowledge, views and values regarding the storage and use of newborn blood spots for research purposes. The survey has indicated that prolonged storage (longer than the current five years) and various kinds of research for different purposes are generally supported, yet that respondents expect to have access to and a say in decisions on the use of their child’s blood spots for research..

The qualitative case study for the Parelsnoer Institute has focused on the neurodegenerative Pearl,  and specifically the operations of this Pearl at the VU University Medical Center Amsterdam (VUMC). It shows how upgrading and integrating clinical biobanks for collaborative (future) research across the eight Dutch UMCs implies connections and combinations of care and research and of patients and research participants to a larger extent than before. Although this may be self-evident for those professionally involved in research and biobanking, explicit acknowledgement and societal awareness of such phenomena is crucial for its socially responsible development and governance. 

In conclusion, we call for a broader discussion on the normalization of biobanking in the Netherlands, to support patients’ and citizens’ understanding of and agency in their new roles in the biomedical research system. As part of the project, we have made several contributions to this endeavour in our frequent interactions with various stakeholders.