Lindsay Green-Noble

The Ontario Brain Institute is a provincially‐funded, not‐for‐profit research centre created to maximize the impact of neuroscience and establish Ontario as a world leader in brain research. A critical component of this mandate is to share neuroscience data, nationally and internationally to maximize data utility, reusability, and accessibility. Participant privacy is of highest import when sharing data and must be at the forefront of all decisions. The OBI data release model is one that is firmly grounded in meaningful consent and a constant mindfulness that participants, whose data is uploaded to Brain-CODE, are trusting us to keep their data safe. One solution presented to protect participants is the use of anonymization techniques such as bucketing, redaction and date shifting. However, when data samples are incredibly small, the removal of direct and potential (quasi) identifiers is so expansive that the data utility is lost, along with many of the benefits of research data sharing. This is when we must consider other possible ways to protect participants’ rights and privacy. The model of anonymization is also limited when you expand the release of data to other modalities such as genomic data. This talk will present the major challenges of supporting research data sharing and data utility while ensuring that participant privacy protections remain in place. This is particularly critical when items that are considered identifiers are mission critical to answer the research question. Keywords: data sharing, privacy