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Sharing and Caring

Big Data is a powerful tool for health researchers, but ethical, legal and technical questions must be considered before genomic information is shared.

Advances in DNA sequencing have allowed researchers to accumulate vast amounts of human genomic data. In the right hands, this “Big Data” has many potential health applications, from increasing our knowledge of rare diseases and supporting the development of new cancer therapies to helping clinicians care for patients. But sharing genomic information across international and provincial borders — and even between local institutions — can be extremely complex. There are technical challenges to overcome, because datasets are so diverse, and a range of ethical and legal questions to consider around regulation, privacy and consent.

“People are rightfully cautious about data sharing,” says lawyer Prof. Bartha Knoppers, chair of the McGill University-based Public Population Project in Genomics and Society (P3G). “But we need to share in order to have a sustainable universal health-care system.”

Prof. Knoppers is one of the principal investigators leading the three-year Canadian International Data Sharing Initiative (Can-SHARE), which will create policies and tools that facilitate responsible genomic collaboration across this country and beyond.

In addition to supporting a regulatory and ethics working group of the Global Alliance for Genomics and Health, Can-SHARE involves Canadian-led rare disease demonstration projects. One researcher might do a study with a few thousand participants, but they will gain more insight into the genetic variation they’re exploring by aggregating and analyzing very large datasets. “Strong statistical power is often needed to demonstrate that a certain trait has a health impact,” says Anne Marie Tassé, P3G’s Executive Director. “Data sharing allows researchers to obtain better quality results more quickly.”

Can-SHARE will also incorporate pilot projects that create harmonized approaches to data sharing, including codes of conduct for data sharing and governance. “When we work at the global level, we need to make sure we have common policies among all the partners,” says Prof. Knoppers. “Can-SHARE will help us build these global policies and also transform them into practical tools.”

If one type of research ethics review is deemed to be the most effective, for example, multiple parties involved in a project could mutually recognize the same best practices, and devote more of their time and resources to research instead of inconsistent ethics approvals. “Once research knowledge is obtained,” says Tassé, “the work can move forward and the next step could very well be the development of a better or new therapeutic approach.”