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Essay argues research subjects should have access to their raw data

Some argue that samples given to biobanks are like an  information deposit.
Some argue that samples given to biobanks are like an information deposit. Credit:

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For the past year, physicians, researchers, and ethicists have vigorously debated whether unexpected findings detected in people’s genomes should be reported back to patients or research subjects. In a provocative essay published Thursday, researchers from Harvard Medical School and King’s College London argue that an even more fundamental right has been totally absent from the conversation: research participants’ access to the raw data they provide.

In the journal Science, the researchers argued that people should have that basic access. Giving a blood or saliva sample to a biobank should be less like sending personal information into the abyss and more like making a deposit in a real bank. The one-way flow of information from research participant to scientist, they argue, is outdated and paternalistic.

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