Introduction

The objective of this website is to: (i) provide a non exhaustive general overview of genetic information; (ii) provide more specific information as it relates to issues of genetic privacy and human genetic research biobanks; and (iii) make available the GE3LS (genomic, ethical environmental, economic, and legal issues) portion of the ARCTIC (Assessment of Risk for Colorectal Tumours in Canada) project, which is working to develop a predictive test for colon cancer susceptibility that can be incorporated into population based screening tests. The information on this website is not only pertinent to the ARCTIC project. It also provides 'stand alone' information on genetic information, genetic privacy and human genetic research biobanks as well as links to relevant articles, texts and legislation (where applicable).

Genetic information, privacy, and human genetic research biobanks are discrete as well as intersecting notions. Issues of privacy relate not only to the nature of genetic information but also to the possibility of indefinite storage in databanks. The individual and familial nature of genetic information makes it difficult to place 'duty to warn', 'disclosure' and 'rights to know and not to know' squarely under the heading of 'Genetic Information' or under the heading of 'Privacy'. The interrelationship of these notions suggests that they may be regarded as part of an interconnected web. We have used our discretion in arranging the sub topics. As far as possible, sub topics will be crossed referenced.

This material is updated on a regular basis. Please check back periodically for additional resources.

See HUMGEN for a more broad based website that relates to the ethical, legal and social issues of human genetics generally: http://www.humgen.umontreal.ca/int/.

Contact

To inquire about the project, contact arctic.law@utoronto.ca

Introduction

Contact

Sponsors