New data analysis technologies are advancing day by day that help federally-funded researchers crunch more information and direct them to successful development and progress. Unfortunately, this has an underlying negative effect: the potential exposure of a company or individualâ€™s private & personal information particularly with the federal government failing to remain current with modern research practices.Â Several federal groups â€“ including the departments of Homeland Security, Energy, Agriculture, Health and Human Services and Education â€“ are proposing that, regulations surrounding human test subjects be revised to reflect new research methods. For example, appropriate researchers would be required to hand out consent forms to potential subjects, informing them that their leftover biological samples and data culled from them could be used in future projects.
Research shows has shown that, investigators might use powerful computers to churn through information, be it the records from medical, educational, criminal justice or administrative claims. The proposal claims that information that was “treated as non-identified can now be re-identifiedâ€. In an effort to update the consent process, the agencies have proposed several adjustments to the “Common Rule,” a more than decades-old process that oversees federal research on human subjects.
Relatively recent developments in scientific research â€“ including the use of analytics services on human specimens and the increasing use of large volumes of electronic health data â€“ have changed patients’ expectation of privacy, the proposal said. “Yet, these developments have not been accompanied by major change in the human subjects research oversight system, which has remained largely unchanged over the last two decades,” the new proposal stated.
Despite the risks, more people want to participate in research. This “participatory model” has evolved alongside the “widespread use of social media, in which Americans are increasingly sharing identifiable personal information and expect to be involved in decisions about how to further share the personal information, including health-related information that they have voluntarily chosen to provide.”
This is where the definition of big data falls short with regards to federal research and â€œanother set of rule-sets which takes Privacy very seriously should be incorporated within the current federal research systemâ€.
Editors Note:Â Ideas referred from;
Ravindranath, Mohana. “What Big Data Means for Human Subjects in Federal Research.”
Nextgov. N.p., 25 Sept. 2015. Web. 2 Oct. 2015.