Knowledge Centre

  • P3G Model Framework for Biobank Governance (2013)
    The proposed governance framework incorporates an analysis of the last five years of legislation, policies and literature that have influenced and shaped the governance of biobanks, and reflects the P3G’s vision of global access to research tools. Moreover, the practices of current P3G members were reassessed, including their governance mechanisms and changes in policy since 2008.

 

  • P3G Modèle de Gouvernance des Biobanques (2013)
    Le modèle de gouvernance proposé est fondé sur une analyse de la législation, des politiques et de la littérature des cinq dernières années portant sur la gouvernance des biobanques. Les pratiques actuelles des biobanques membres de P3G ont également été étudiées. Ce modèle reflète la vision de P3G en faveur d’un accès global aux outils de recherche.

 

  • P3G Model Framework for Biobank Access Policy: Core Elements (2013)
    The following presents the core elements to be included or at least considered when drafting an access policy for a population biobank. This generic list provides biobanks with guidance to create access policies specific to their needs that adequately address access issues, irrespective of geographical location.

 

  • P3G Politique d’Accès: Modèles & Éléments Essentiels (2014)
    Le présent document énumère une série d’éléments à considérer lors de la création de politiques d’accès aux données et échantillons de biobanques. Cette liste générique permet aux biobanques de créer des politiques adaptées à leurs besoins, section par section, en abordant l’ensemble des éléments importants.
  • GA4GH Data Sharing Lexicon
    Sharing of genomic and health data is increasingly international, but must contend with discrepancies in the terms employed by applicable laws, ethics policies, and regulatory systems. The GA4GH Data Sharing Lexicon aims to support international data sharing by promoting common/concordant terms within the GA4GH and across jurisdictions and research contexts.
  • GA4GH Framework for Responsible Sharing of Genomic and Health Related Data (2014)
    The GA4GH Framework for Responsible Sharing of Genomic and Health-Related Data provides a principled and practical framework for the responsible sharing of genomic and health-related data. It contains foundational principles and core elements for responsible data sharing and is guided by human rights, including the right to benefit from the progress of science, as well as privacy, non-discrimination, and procedural fairness.

 

  • P3G Model Framework for Biobank Access Policy: Core elements (2013)
    The following presents the core elements to be included or at least considered when drafting an access policy for a population biobank. This generic list provides biobanks with guidance to create access policies specific to their needs that adequately address access issues, irrespective of geographical location.

 

  • P3G Politique d’Accès: Modèles & Éléments Essentiels (2014)
    Le présent document énumère une série d’éléments à considérer lors de la création de politiques d’accès aux données et échantillons de biobanques. Cette liste générique permet aux biobanques de créer des politiques adaptées à leurs besoins, section par section, en abordant l’ensemble des éléments importants.

 

  • P3G Generic Access Agreement for Population Genomics Studies (2013)
    This document presents a generic access agreement for use in population genomic studies. These access policies are now being operationalized into agreements that clearly stipulate the obligations of researchers and institutions who wish to access these resources.
  • Consent Tools: Prepared for the GA4GH (Genomic Alliance for Genomics and Health) by the P3G-IPAC (2014)
    In support of the Framework for Responsible Sharing of Genomic and Health-Related Data, P3G-IPAC* prepared 3 consent tools for the Global Alliance for Genomics and Health. The first, on Legacy Consent and International Data Sharing (A), covers situations where researchers already have data collected using older “legacy” consents. The second, on Clauses for International Data Sharing (B) addresses situations where researchers wish to add clauses on international data sharing to actual consents. The third, a Generic International Data Sharing Prospective Consent Form, provides a generic template for new, prospective studies (C). All will require local adaptation.

 

  • P3G Generic Information Pamphlet and Consent Form (2014)
    This document is designed as a template for those involved in prospective, longitudinal population studies. It is tailored to obtaining the consent of adult participants and does not include any additional considerations for the consent of minors or vulnerable populations. Specifically, this template should assist biobanks in drafting their information brochures and consent forms for individuals considering participating in their study.

 

  • P3G Pamphlet d’Information et Formulaire de Consentement Génériques (2014)
    Le présent outil se base sur les documents préparés en 2007 par P3G et incorpore de nouveaux éléments essentiels identifiés par la littérature et reconnus en vertu des pratiques actuelles des biobanques. Ce document constitue un modèle pour les biobanques effectuant des études populationnelles longitudinales. Il vise les participants majeurs et aptes à donner leur consentement, mais n’aborde pas les aspects particuliers du consentement de participants mineurs ou juridiquement inaptes à consentir.
  • Population Studies: Return of Research Results and Incidental Findings Policy Statement (2012)
    This Policy Statement considers the issue of return of results in the specific context of population genomics and addresses possible modalities for such return. Its objectives are to: (1) delineate the particular characteristics of population studies, (2) distinguish the circumstances surrounding access by researchers to such studies, and (3) develop a framework for the return of research results and incidental findings. It is a P3G-CPTP (Canadian Partnership for Tomorrow Project) Collaboration.