Geneticists are debating on Twitter whether study participants should have access to their genetic information, Nature News reports.
Cornell University geneticist Charles Danko turned to his Twitter followers for help to convince his institutional review board that they should have such access. Columbia University's Yaniv Erlich responded that millions of people have access to their raw genetic data through services like 23andMe with no adverse events reported.
This discussion, Nature News notes, has been raging for some time, and has mostly centered on the difficulty of accurately predicting disease risk from genetic data.
"The objection to data sharing that I see come up often is that incidental findings from a patient's data set may tell them something about their susceptibility for disease. In some cases, participants may not want to know," Danko tells Nature News. "However, I am not convinced that the risk outweighs a subject's right to access their own data."
The Genomes 2 People research program, which is directed by Harvard Medical School's Robert Green, also gives Danko some advice, should he return such data to participants, suggesting that the presentation of results be customized for each test type.