Ethics, Governance and Public Engagement

This section presents material principally related to ethics, governance and public engagement issues related to population-based biobanking.

P³G Lexicon The P³G lexicon defines terms according to international norms and expertise, aiming to provide consensus on the terminology used in the field of population genomics. This page is maintained by the P³G Observatory.

Samples and Data Access Agreements: Core Elements and Generic Clauses  This document provides core issues to be considered when drafting an access agreement for samples and/or data of a biobank. In addition, it also provides a generic clause for each core issue identified that can be modulated according to the needs of the biobank. This document is related and is in continuation of the document titled "P3G Sample and Data Access: Core Elements". This was drafted by the Ethics and Policymaking Core of P3G (2009).

P³G Sample and Data Access: Core Elements  This document identifies core elements from the Sample and Data Access Policies of P³G-member biobanks. This was drafted by the Ethics and Policymaking Core, Centre de recherche en droit public (CRDP), Montreal University (2009).

Building a model framework for the governance of biobanks This paper is discussing the background work to develop a model governance framework based on the practice of existing P³G-member biobanks and presents a draft model framework. Prepared by the Ethics and Policymaking Core, Centre de recherche en droit public (CRDP), Montreal University (2008).

Model Consent Form This template is designed for use by those involved in prospective, longitudinal population genomics studies and is based on approaches found amongst P3G members. It is designed to indicate the elements that may be considered when creating a consent form for a resource or biobank project. Prepared by the Genetics and Society Project, Montreal University (2007).

Model Information Pamphlet This generic document is designed as a template for use by those involved in prospective, longitudinal population genomics studies and is based on approaches found amongst P³G members. It is designed to indicate the elements that may be considered when creating an information pamphlet for a resource or biobank project. Prepared by the Genetics and Society Project, Montreal University (2007).

P³G Charter of Fundamental Principles This document describes the 5 main principles which underlie the activities of P³G: promotion of the common good, responsibility, mutual respect, accountability, and proportionality. It was adopted by the P³G Board of Directors (2007).

HUMGEN
This website includes various research tools and presents social, ethical and legal aspects of human genetics. Issues such as confidentiality of genetic data, consent to genetic testing, and stem cell research are explored.

CanadaGE³LS Research Database 
This website presents basic information on Canadian-funded research projects on ethical, economic, environmental, legal and social aspects of genomics. Projects can be searched by keywords or using different search fields (title of project, pre-selected keywords grouped by subject, investigator, co-investigator, region, year of project). A Genome Canada maintained website (2010).

PopGen
This website presents a database of international, regional and national laws and policies and literature addressing human genetic population research.

Comparison Chart of Guidelines This document compares selected reference guidelines written by well-known organizations. These guidelines cover all biobanking steps, i.e. biological sample collection, labelling, processing, and storage applied to a wide range of sample types. A P3G-prepared document. (2008)

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