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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 The one-way flow of information from research participant to scientist, they argue, is outdated and paternalistic.