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Returning individual results to subjects, in 300+ pages

Considerations and recommendations for returning individual results to human research participants are the focus of a newly released report by the National Academy of Sciences. The full report exceeds 300 pages, but the executive summary runs to a much more manageable 27 pages.

The NIH’s Office of Science Policy has a blog item about the new report which includes a link to it. Please note that you can read the report online for free, and also download a free PDF of it.

The possibilities of individual research results grow with each advance in scientific knowledge and technology. We’ve seen how many investigators ask subjects’ permission to keep data and specimens for future research. The revised Common Rule, slated to take effect in January, also addresses the retention and use of specimens in more detail than the current Common Rule does, due to the samples’ value to research and to the growing number of things they can be used and tested for. The possibility of returning individual test results to subjects, and the value of those results, is something IRBs will have to increasingly consider in the future. Please take a look at the report and consider its guidelines. If you have trouble accessing it, please contact the IRB Blog Original Source Archivist at paalediths@uams.edu.