Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador

Abstract

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.

Public attitudes towards genomic data sharing: results from a provincial online survey in Canada

“…Newfoundland and Labrador, Canada has long been recognized as an important genetic isolate [49] such that there has been a history of interest in exploiting this genetic data for both its potential health benefits, but also for commercial gain. As such we were curious as to how the general public perceived the importance of maintaining control of access to their genetic data.…”

Building Bridges to Integrate Care (BRIDGES): Incubating Health Service Innovation across the Continuum of Care for Patients with Multiple Chronic Conditions

“…187 Because a limited number of Founder Families make up a substantial portion of Newfoundland's population, there is an unusual concentration of rare genetic disorders on the island. 201 TPMI's design turns that problem into an opportunity. By targeting patients and families at high risk for certain diseases (e.g., various cancers, sudden heart attacks due to cardiomyopathy, inherited deafness, and inflammatory arthritis), it aims to improve care while reducing healthcare costs and generating novel research findings.…”

Biomedical data privacy: problems, perspectives, and recent advances

“…While the previous papers focus on traditional health information, the last paper in this track, by Kosseim and colleagues, addresses privacy issues associated with the management of *omics data in particular, with a specific focus on genomics. 42 This paper describes the legal and ethical principles and practices adopted in the Canadian provinces of Newfoundland and Labrador to enable research with genomic, phenomic, and genealogical data.…”