Scientists have called for data held in biobanks to be made accessible to the people donating material and data to them. In a paper published today in Science, Jeantine Lunshof and George Church from Harvard Medical School and Barbara Prainsack from King's College London write that donors should have unrestricted access to data derived from their own material and that advanced technology means allowing such access is today a question of will rather than feasibility.
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. Lunshof, Church and Prainsack argue that people donating material and data to biobanks should also have access to their own raw data.
Prainsack, reader (associate professor) in the Department of Social Science, Health & Medicine at King's, said, "We believe there are compelling ethical reasons for enabling donors to access the raw data derived from their material deposited in any kind of repository. Providing access to the data that are derived directly from the sample, before analysis and interpretation, recognizes the donor's agency in at least three ways: freedom to decide (if they wish to access data), option of independent analysis and informed decision about participation.
"Although we use biobanks as an example in our paper, our argument is applicable in principle to all contexts of database-based research. There is a crucial difference between providing access to data and returning findings. The possibility for research participants to access their raw data is a basic requirement for a just and reciprocal relationship, establishing at least a basic symmetry between those who donate and those who use data for their research."
Lunshof, Marie Curie Fellow in the HMS Department of G
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King's College London