Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador
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 Th...
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fthighwire:oai:open-archive.highwire.org:amiajnl:amiajnl-2012-001009v1 2023-05-15T17:18:03+02:00 Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador Kosseim, Patricia Pullman, Daryl Perrot-Daley, Astrid Hodgkinson, Kathy Street, Catherine Rahman, Proton 2012-08-02 02:00:44.0 text/html http://jamia.bmj.com/cgi/content/short/amiajnl-2012-001009v1 https://doi.org/10.1136/amiajnl-2012-001009 en eng BMJ Publishing Group Ltd http://jamia.bmj.com/cgi/content/short/amiajnl-2012-001009v1 http://dx.doi.org/10.1136/amiajnl-2012-001009 Copyright (C) 2012, American Medical Informatics Association Research and applications TEXT 2012 fthighwire https://doi.org/10.1136/amiajnl-2012-001009 2013-05-27T15:23:51Z 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. Text Newfoundland HighWire Press (Stanford University) Canada Newfoundland Journal of the American Medical Informatics Association 20 1 38 43 |
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HighWire Press (Stanford University) |
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English |
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Research and applications |
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Research and applications Kosseim, Patricia Pullman, Daryl Perrot-Daley, Astrid Hodgkinson, Kathy Street, Catherine Rahman, Proton Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador |
topic_facet |
Research and applications |
description |
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. |
format |
Text |
author |
Kosseim, Patricia Pullman, Daryl Perrot-Daley, Astrid Hodgkinson, Kathy Street, Catherine Rahman, Proton |
author_facet |
Kosseim, Patricia Pullman, Daryl Perrot-Daley, Astrid Hodgkinson, Kathy Street, Catherine Rahman, Proton |
author_sort |
Kosseim, Patricia |
title |
Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador |
title_short |
Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador |
title_full |
Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador |
title_fullStr |
Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador |
title_full_unstemmed |
Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador |
title_sort |
privacy protection and public goods: building a genetic database for health research in newfoundland and labrador |
publisher |
BMJ Publishing Group Ltd |
publishDate |
2012 |
url |
http://jamia.bmj.com/cgi/content/short/amiajnl-2012-001009v1 https://doi.org/10.1136/amiajnl-2012-001009 |
geographic |
Canada Newfoundland |
geographic_facet |
Canada Newfoundland |
genre |
Newfoundland |
genre_facet |
Newfoundland |
op_relation |
http://jamia.bmj.com/cgi/content/short/amiajnl-2012-001009v1 http://dx.doi.org/10.1136/amiajnl-2012-001009 |
op_rights |
Copyright (C) 2012, American Medical Informatics Association |
op_doi |
https://doi.org/10.1136/amiajnl-2012-001009 |
container_title |
Journal of the American Medical Informatics Association |
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20 |
container_issue |
1 |
container_start_page |
38 |
op_container_end_page |
43 |
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1766086236914581504 |