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J Am Med Inform Assoc 20:38-43 doi:10.1136/amiajnl-2012-001009
  • Focus on patient privacy

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

Open Access
  1. Proton Rahman2
  1. 1Office of the Privacy Commissioner of Canada, Ottawa, Ontario, Canada
  2. 2Faculty of Medicine, Memorial University, Newfoundland, Canada
  3. 3Population Therapeutics Research Group, Memorial University, Memorial University, Newfoundland, Canada
  1. Correspondence to Patricia Kosseim, Office of the Privacy Commissioner of Canada, Ottawa, Ontario K1A 1H3, Canada; patricia.kosseim{at}priv.gc.ca
  1. Contributors PK and DP are primary authors who conceived the idea for the paper and drafted the manuscript. AP-D, KH and CS reviewed the manuscript to ensure accuracy of the description of the Newfoundland Genealogy Database and Heritability Analytics Infrastructure as they were instrumentally involved in creating and testing the database. PR is the principal investigator for the project.

  • Received 12 April 2012
  • Accepted 10 July 2012
  • Published Online First 2 August 2012

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.

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.

Footnotes

  • The views in this paper are the author's own personal views. They do not constitute a legal opinion nor represent the position of the OPC or any other data protection commissioner. The OPC, as a Federal Office, has no jurisdiction over the subject of this paper.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/3.0/ and http://creativecommons.org/licenses/by-nc/3.0/legalcode

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