Should research subjects have access to their raw data? - Science - Boston.com

"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 argue 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 The one-way flow of information from research participant to scientist, they argue, is outdated and paternalistic. 'When you have your precious money and you give it to a bank, regardless of what happens with this money, you get a written receipt formally. You can see there it is—$5,000 has arrived. That basic acknowledgment is lacking' in science, said Jeantine Lunshof, a fellow in the genetics department at Harvard Medical School who has been deeply involved in the Personal Genome Project, which offers open access to participants’ genetic data. 'From a moral point of view, an ethical point of view, this is a very unequal relationship. And there is no good reason, as I see it, to argue for this inequality.' Lunshof and her co-authors, including Harvard genetics researcher George Church, acknowledge that the questions about what findings to return to individuals are complex, since it may involve questions about the relevance of the information and what to do with results. What seems far more clear-cut to them is basic access to raw data—the samples they’ve provided to the research. For example, in a genome study that would include the DNA sequence that comes out of the machine, without the analysis of the sequence. They could bring that raw data to a service that would help them interpret it ..."