title: The Adoption of Cloud Computing in the Field of Genomics Research: The Influence of Ethical and Legal Issues.
abstract: This study aims to understand the influence of the ethical and legal issues on cloud computing adoption in the field of genomics research. To do so, we adapted Diffusion of Innovation (DoI) theory to enable understanding of how key stakeholders manage the various ethical and legal issues they encounter when adopting cloud computing. Twenty semi-structured interviews were conducted with genomics researchers, patient advocates and cloud service providers. Thematic analysis generated five major themes: 1) Getting comfortable with cloud computing; 2) Weighing the advantages and the risks of cloud computing; 3) Reconciling cloud computing with data privacy; 4) Maintaining trust and 5) Anticipating the cloud by creating the conditions for cloud adoption. Our analysis highlights the tendency among genomics researchers to gradually adopt cloud technology. Efforts made by cloud service providers to promote cloud computing adoption are confronted by researchers' perpetual cost and security concerns, along with a lack of familiarity with the technology. Further underlying those fears are researchers' legal responsibility with respect to the data that is stored on the cloud. Alternative consent mechanisms aimed at increasing patients' control over the use of their data also provide a means to circumvent various institutional and jurisdictional hurdles that restrict access by creating siloed databases. However, the risk of creating new, cloud-based silos may run counter to the goal in genomics research to increase data sharing on a global scale.
authors.affiliation: Centre of Genomics and Policy, Faculty of Medicine/Department of Human Genetics, McGill University, Montréal, Québec, Canada.
authors.forename: Kathleen
authors.initials: K
authors.lastname: Charlebois
authors.affiliation: Centre of Genomics and Policy, Faculty of Medicine/Department of Human Genetics, McGill University, Montréal, Québec, Canada.
authors.forename: Nicole
authors.initials: N
authors.lastname: Palmour
authors.affiliation: Centre of Genomics and Policy, Faculty of Medicine/Department of Human Genetics, McGill University, Montréal, Québec, Canada.
authors.forename: Bartha Maria
authors.initials: BM
authors.lastname: Knoppers
mesh_terms: D000067917:Cloud Computing / Q000941:ethics* / Q000331:legislation & jurisprudence*; D016494:Computer Security; D016208:Databases, Factual / Q000941:ethics; D023281:Genomics / Q000941:ethics; D006801:Humans; D016247:Information Storage and Retrieval / Q000941:ethics; D007407:Interviews as Topic; D012106:Research