Welcome to Canadian Genetic Disease Network

Genetic disease contributes in a substantial way to the burden of ill health in Canada. It is estimated that at least one in 20 Canadians will experience a gene-related impairment, disability, or handicap by age 25 and
that during their lifetime more than half the population will have a disease that in some cases has a genetic component to its cause.

For example, many of the chronic diseases of middle and old age appear to be multifactorial and have a genetic component; up to half the admissions to paediatric hospitals and 12% of adult admissions to general hospitals are for 'genetic' diseases; an undetermined share of psychiatric admissions have some genetic link.

Will new medical genetic technologies have a significant effect on the characteristics and health of future generations? There is no easy answer.

We do know, however, that medical genetic research in Canada is rapidly producing new technologies that have potential long-term implications through prevention and treatment of genetic disease, and through identification and control of mutation-causing agents.

The potential impact on quality of life and health care efficacy is significant.

Yes - it is in the best interests of each individual to research the issues surrounding medical genetics ethics, from a wide variety of sources.

The issues are complex and involve inherent conflicts, while differing attitudes reflect the diversity of opinions and values among Canadians. For example, there is currently no public consensus (and there may never be a consensus) on issues such as diagnosis of susceptibility to disease and potential impact of genetic engineering.

On the one hand, not to apply genetics in health care will result in failure to develop and deliver many services beneficial to individual Canadians. On the other hand, failure to recognize relevant ethical issues may lead to inappropriate uses of genetic technologies and information.

No satisfactory policies will emerge if public concerns about genetics in health care are not addressed, and if those concerns are not fully and objectively researched.

A process is required to articulate concerns which reflect the opinion of a cross-section of Canadians, and to work toward developing policies that allow a range of choices acceptable to most Canadians.

Interview with Director of Canada's Stem Cell Network

In Canada, our tax dollars play a significant role in supporting and developing basic medical research.

A good place to start your investigation is on the 'Funding and Infrastructure' page of this site. We list and describe the major government funding agencies such as the Canadian Institutes of Health Research, the Canada Foundation for Innovation, and Genome Canada. By exploring these sites on the internet, you will find a wealth of information about the innovative spending Canada is carrying out on health research.

Yes - education is the best tool we have to prepare ourselves for input to public policy.

Canadians benefit from up-to-date information on health care issues relevant to their own personal well-being; they need factual and unbiased information to improve their understanding of the social and technical issues surrounding health care systems in general and genetic health care technologies and services in particular.

In a democratic society, an informed public is essential for appropriate and effective decision making.

We also have a personal responsibility to update and supplement our basic scientific literacy throughout our lives.

Please consult the 'Resources and Links' pages of this site and visit us often for updates.

As citizens, students, professionals, and members of the media we are hungry to learn more about health care issues and genetic disease.

Until genetic knowledge and technologies are appropriately integrated into our health care systems, Canadians will feel this hunger. In the meantime, we can learn about the impact of genetic technologies and how to avoid their misuse by becoming aware of the benefits and limitations of these technologies and services.

This awareness can be anchored in a factual scientific education and nutured through full and open discussion of the issues.

At CGDN, we are committed to facilitating awareness and education in genetic research. We may be contacted at our head office in Vancouver for access to our scientific speakers' bureau and for assistance in arranging school visits to our laboratories.