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Genomics in Society: Rights and Responsibilities

Status: 
Past
Competition: 
Competition I
Sector: 
Health
Genome Centre(s):
Génome Québec
Project Leader(s):
Bartha Maria Knoppers (Université de Montréal)
GE3LS: 
Yes
Fiscal Year Project Launched: 
2001-2002
Project Description: 

This is a stand-alone GE3LS project.

Knowledge from the Human Genome project promises huge benefits for society. Examples include diagnosis and treatment of human diseases, and the development of better food sources. But history has taught us that new technologies can be a two-edged sword, and we must think very carefully about how to apply them. The safety and benefits of genetically modified plants and how to carry out human stem-cell research are two recent examples of controversy about the use of biological technology. Canada needs to involve both experts and the general public in the discussion about how to utilize genomic knowledge.

Our research program son ways to collect, control, protect and use information that comes from the Human Genome project. We use this information to develop ethical, legal, and social approaches to genomic research. We suggest ways in which governments and scientists can use responsible research practices and policies when dealing with humans,animal or plants. Our results will help governments make policies that promote the safe applications of genomic research in the full knowledge of public opinion.

Our studies included the following: How do genomic researchers create and use the information stored in human DNA databases? What are the responsibilities of genomic researchers and other professionals to maintain the confidentiality of genomic information? What aspects of human genome research are important to the general public? What are the rights and ethics in experiments with transgenic animals? Throughout the course of our research we promoted dialogue between scientists and the general public. 

Outcomes: 
  • Studies of public attitudes concerning the applications of genetic and genomic research, policy recommendations to government, and the creation of tools to improve communications between scientists and the general public.
  • Number of research personnel employed by the project: 15
  • Number of peer reviewed publications published: 47 plus 10 books, 17 book chapters, 38 invited presentations, and 10 awards.
  • Number of public outreach events held: 46