What is it about?
Databanks containing information and biological materials from individuals are a crucial resource for medical and other research. Currently, data held in such biobanks are accessible only to researchers and not to the individuals who contributed the samples and data. In this article we argue that people donating material and data to biobanks should also have access to their own raw data.
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This page is a summary of: Raw Personal Data: Providing Access, Science, January 2014, American Association for the Advancement of Science,
DOI: 10.1126/science.1249382.
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Resources
Personal Genome Project blog
Live Chat: Do You Have a Right to Your Personal Data?
Every day, people around the world subject themselves to tests, contributing data for research studies, clinical diagnoses, and care. But should donors have access to their raw data? What right, for example, should a donor have to download the raw output from a genetic screen of her saliva? As technology allows more people to access more information and makes tests once found only in expensive laboratories available and affordable from companies, should we worry about information overload trigge
Raw Data: Access to Inaccuracy- Response
We thank Janssens, and Dondorp et al., for their thoughtful comments on our Policy Forum “Raw Personal Data: Providing Access”. We fully agree with these colleagues on the importance of considering very carefully what results should be returned to data donors. Concluding from this, however, that patients and research participants should be unable to access their raw data is a non sequitur. Here we explain why this is the case.
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