Data sharing models designed to facilitate global business provide insights for improving transborder genomic data sharing. We argue that a flexible, externally endorsed, multilateral arrangement, combined with an objective third-party assurance mechanism, can effectively balance privacy with the need to share genomic data globally.

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In this article, the authors describe relatively recent efforts by scientific research agencies to promote, through various funding programs, the integration of social sciences and humanities with the natural sciences. This “integrated” approach seeks to study science through a broader interdisciplinary lens in order to better anticipate, understand, and address its ethical, legal, and social implications. The authors review the origins and evolution of this trend, as well the arguments which have been formulated by both proponents and critics of integration. By using Genome Canada's “GE3LS” Research Program as a case study, the authors discuss the successes and continuing challenges of this model based on evaluation results available to date. The authors then go on to examine and compare three possible models for improving the future success of the GE3LS research program, including: 1) enhancing the current integrated research approach through incremental refinements based on concrete evidence and lessons learned; 2) promoting greater interaction and synergy across GE3LS research projects through a deliberate, systematic and coordinated “hub and spoke” approach; and 3) taking a broad programmatic approach to GE3LS research by creating a central resource of available expertise and advisory capacity.

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ObjectiveTo provide a legal and ethical analysis of some of the implementation challenges faced by the Population Therapeutics Research Group (PTRG) at Memorial University (Canada), in using genealogical information offered by individuals for its genetics research database.Materials and methodsThis paper describes the unique historical and genetic characteristics of the Newfoundland and Labrador founder population, which gave rise to the opportunity for PTRG to build the Newfoundland Genealogy Database containing digitized records of all pre-confederation (1949) census records of the Newfoundland founder population. In addition to building the database, PTRG has developed the Heritability Analytics Infrastructure, a data management structure that stores genotype, phenotype, and pedigree information in a single database, and custom linkage software (KINNECT) to perform pedigree linkages on the genealogy database.DiscussionA newly adopted legal regimen in Newfoundland and Labrador is discussed. It incorporates health privacy legislation with a unique research ethics statute governing the composition and activities of research ethics boards and, for the first time in Canada, elevating the status of national research ethics guidelines into law. The discussion looks at this integration of legal and ethical principles which provides a flexible and seamless framework for balancing the privacy rights and welfare interests of individuals, families, and larger societies in the creation and use of research data infrastructures as public goods.ConclusionThe complementary legal and ethical frameworks that now coexist in Newfoundland and Labrador provide the legislative authority, ethical legitimacy, and practical flexibility needed to find a workable balance between privacy interests and public goods. Such an approach may also be instructive for other jurisdictions as they seek to construct and use biobanks and related research platforms for genetic research.