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Date:1/24/2014

enetics and assistant professor in the VU University Amsterdam Department of Molecular Cell Physiology, said, "There is currently a rich debate about what results from data and sample analysis should be returned to participants. In addition to that, individuals should be able to access their raw data right from the start.

"These datawhich should be available for people to download themselves, if they choose to do socould be used by biobank participants to have independent analyses done, to analyse these data themselves or to store them in case they may become useful for personal decision-making in the future. Given that web-based technologies are regularly available to enable such access without incurring high additional cost, providing access to people's own raw data is a matter of will more than of feasibility."

In their paper, the authors neither expect nor suggest that all participants in a biobank will make use of an opportunity to access their raw data, but they assert that the principle of having such an opportunity will be an important step toward greater reciprocity in the relationship between biobanks and their participants.

Prainsack said, "It is clear that giving donors access to their raw data is essential to taking individuals seriously as partners in research, not merely as sources of sample and data."


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Contact: Anna Mitchell
anna.i.mitchell@kcl.ac.uk
44-075-454-22544
King's College London
Source:Eurekalert  

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