GE3LS – Genetic Information, Privacy and Biobanks

Assessment of Risk for Colorectal Tumours in Canada (ARCTIC) – Integrated GE3LS research

GE3LS sub-project leader:  Trudo Lemmens, University of Toronto

Project Summary
In Canada, over 16,000 new cases of colon cancer occur on average each year; 6,000 result in deaths.  In an effort to improve early detection and clinical intervention, the ARCTIC project team, led by Drs. Brent Zanke and Thomas Hudson, endeavoured to develop a molecular test to predict peoples’ genetic susceptibility to colon cancer.

GE3LS Research Summary
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.

The GE3LS component of the ARCTIC project studied such issues, focusing on the following:

  • Personal information, informed consent, collection, storage and internal/international transfer in long-term genetic databanks
  • Ethical/legal duty to warn and the privilege to disclose
  • Genetic research, privacy and property in an international context
  • DNA databanks and vulnerable populations, benefit sharing and the commercialization of genetic testing
  • Access to and disclosure of data by/to research subjects/patients
  • The development of a colon cancer screening test: ethical and legal issues
  • Researchers’ access to publicly and privately funded databases

Members of the GE3LS research team included Trudo Lemmens (lead), Lori Luther, Linda Hutjens, Nisha Anand, Tom Archibald, Ron Bouchard, Arkadi Bouchelev, Daniel Brinza, Elizabeth Cuellar Barroso, Lorian Hardcastle, and Margaret Ng Thow Hing.