title: Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador.
abstract: OBJECTIVE
  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.
  
  
  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.
  
  
  CONCLUSIONS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Office of the Privacy Commissioner of Canada, Ottawa, Ontario, Canada. patricia.kosseim@priv.gc.ca
authors.forename: Patricia
authors.initials: P
authors.lastname: Kosseim
authors.forename: Daryl
authors.initials: D
authors.lastname: Pullman
authors.forename: Astrid
authors.initials: A
authors.lastname: Perrot-Daley
authors.forename: Kathy
authors.initials: K
authors.lastname: Hodgkinson
authors.forename: Catherine
authors.initials: C
authors.lastname: Street
authors.forename: Proton
authors.initials: P
authors.lastname: Rahman
mesh_terms: D030541:Databases, Genetic / Q000941:ethics / Q000331:legislation & jurisprudence; D030661:Genetic Privacy / Q000941:ethics / Q000331:legislation & jurisprudence; D036281:Genetic Research / Q000941:ethics / Q000331:legislation & jurisprudence; D006801:Humans; D009523:Newfoundland and Labrador; D010375:Pedigree; D016730:Program Development