Article by Vasiliki Rahimzadeh, Kimberley Serpico & Luke Gelinas: “New federal rules require researchers to submit plans for how to manage and share their scientific data, but institutional ethics boards may be underprepared to review them.
Data sharing is widely considered a conduit to scientific progress, the benefits of which should return to individuals and communities who invested in that science. This is the central premise underpinning changes recently announcement by the US Office of Science Technology and Policy (OSTP)1 on sharing and managing data generated from federally funded research. Researchers will now be required to make publicly accessible any scholarly publications stemming from their federally funded research, as well as supporting data, according to the OSTP announcement. However, the attendant risks to individuals’ privacy-related interests and the increasing threat of community-based harms remain barriers to fostering a trustworthy ecosystem of biomedical data science.
Institutional review boards (IRBs) are responsible for ensuring protections for all human participants engaged in research, but they rarely include members with specialized expertise needed to effectively minimize data privacy and security risks. IRBs must be prepared to meet these review demands given the new data sharing policy changes. They will need additional resources to conduct quality and effective reviews of data management and sharing (DMS) plans. Practical ways forward include expanding IRB membership, proactively consulting with researchers, and creating new research compliance resources. This Comment will focus on data management and sharing oversight by IRBs in the US, but the globalization of data science research underscores the need for enhancing similar review capacities in data privacy, management and security worldwide…(More)”.