Groups Experiment With Digital Tools for Patient Consent
A new project by the Genetic Alliance is hoping to turn the traditional investigator-led research paradigm on its head, amassing a group of patients who want to participate in research and giving them access to the fruits of their participation and ongoing control over what happens to their data.
The alliance, which represents an array of disease advocacy organizations, hopes the Registries for All (Reg4All) project will accelerate the pace of medical research and enable patients to take a more active role in managing their health (http://www.reg4all.org). The online interactive portal, created by a company called Private Access, surveys patients about their health status and allows them to see how their answers compare with others (http://bit.ly/12DfCMl). Participants may also submit medical information, such as test results for breast cancer–related BRCA gene variants.
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