J Am Med Inform Assoc - Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador.

Tópicos

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Resumo

JECTIVE: To 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 METHODS: This 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.DISCUSSION: A 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.CONCLUSION: The 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.

Resumo Limpo

jectiv provid legal ethic analysi implement challeng face popul therapeut research group ptrg memori univers canada use genealog inform offer individu genet research databasemateri method paper describ uniqu histor genet characterist newfoundland labrador founder popul gave rise opportun ptrg build newfoundland genealog databas contain digit record preconfeder census record newfoundland founder popul addit build databas ptrg develop herit analyt infrastructur data manag structur store genotyp phenotyp pedigre inform singl databas custom linkag softwar kinnect perform pedigre linkag genealog databasediscuss newli adopt legal regimen newfoundland labrador discuss incorpor health privaci legisl uniqu research ethic statut govern composit activ research ethic board first time canada elev status nation research ethic guidelin law discuss look integr legal ethic principl provid flexibl seamless framework balanc privaci right welfar interest individu famili larger societi creation use research data infrastructur public goodsconclus complementari legal ethic framework now coexist newfoundland labrador provid legisl author ethic legitimaci practic flexibl need find workabl balanc privaci interest public good approach may also instruct jurisdict seek construct use biobank relat research platform genet research

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