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Data sharing in the post genomic era: a contemporary golden rule for bioethics?

  • McGill Department of Family Medicine 5858 Chemin de la Côte-des-Neiges Suite 300 Montréal, QC, H3S 1Z1 Canada (map)

Completion of the Human Genome Project unlocked unprecedented opportunities for discovering underlying etiologies of human disease, including those that present early in life. Delivering on the promises of precision health and genomic medicine is, in part, contingent on developing responsible policies and practices of genomic and associated clinical data sharing. In this talk, I discuss the dual role of scientific collaboration and policy harmonization in data governance as two avenues by which such promises can be realized for patient populations with consent-related vulnerabilities such as children and incompetent adults. I explore through a critical bioethics lens the relationships among i) genomic data producers, ii) users and iii) regulators using findings from my dissertation research on pediatric rare genetic disease as a case example for how proportionate data governance allows for greater data mobilization. I pay particular attention to the ways in which normative ethical-legal bases of data privacy and security map onto, and evolve in line with new genomic possibilities that activate children’s rights to benefit from the clinical applications thereof. I conclude with thoughts on how through proportionate data sharing policies the ‘omics' disciplines can be both equity-enhancing and forward looking as they tackle questions relevant for primary care in the future.