FOR IMMEDIATE RELEASE
OTTAWA, June 10, 2014 – The Canadian Institute of Child Health (CICH), in partnership with McGill University, University of Manitoba and the Winnipeg Health Region has launched a new on-line module focused on Genetics and Paediatric Health.
A child’s well-being and health are dependent upon many factors, such as lifestyle, culture, environmental contaminants and genetic makeup. This user-friendly module provides information about genetic concepts such genes, DNA and inheritance as well as the incidence and prevalence of gene-related conditions in Canada. It also describes how gene-related disorders are detected and how genetic services are organized, including implications for children and families.
“Genetics and Paediatric Health is one of a series of forthcoming modules that form The Health of Canada’s Children and Youth: A CICH Profile. Past editions of the Profile have been in print and have covered many emerging child and youth health topics. This new easily accessed on- line module, provides current information and an overview of the work in the field of paediatric genetics”, says Dr. Denise Alcock, Co-Chair of the CICH Profile National Advisory Group.
Several illnesses and conditions that cumulatively affect large portions of Canadian adults and children involve genetic components – for example, well known conditions like diabetes and congenital anomalies and thousands of rare disorders. Many of these conditions can have permanent negative outcomes including disability and death. In Canada, it is estimated that at least 1 in 20 individuals will experience a gene-related condition or disability by the age of 25, and that more than half the population will experience a gene-related disease over the course of their lifetime.
When a genetic diagnosis is suspected or confirmed, families may have questions about how the condition might have been inherited or the risks of it happening again within the family. They may have concerns or experience stigma, discrimination and guilt. As a result, there is a need to make sure individuals considering genetic testing receive up to date information about the tests’ benefits, risks, accuracy and limitations, including the conditions that cannot be identified with the tests being used.
Dr. Denise Avard, Research Director of the Centre of Genomics and Policy within the Faculty of Medicine at McGill University explains that “Families need to fully understand the impacts of genetic testing, especially when children are involved. The focus should always be on what is in the “best interest” of the child. If there are treatments or effective preventive measures which can be initiated during childhood, this could be clearly beneficial to the child.”
Genetic services are not offered equally or in a standardized way across the country. For example, newborn screening has been going on in Canada since the 1960s yet the programs vary among provinces and there are no nationwide standards for the conditions for which newborns are screened. As new tests are developed, some provinces and territories have expanded their list of conditions for which newborns must be screened, while others have not. Tests for sickle cell disease and hearing loss are not offered universally in Canada despite the benefits of newborn screening for these conditions.
Access to medical geneticists and the services they provide varies across the country as well. In Saskatchewan for example, there is not even 1 medical geneticist per 100,000 children (0-18) compared to Ontario, where there are close to 9 per 100,000. Further, many Canadians cannot easily access needed genetic services and are put on waiting lists.
“The lack of country-wide access to genetic clinics, medical geneticists and genetic counsellors is a real concern. In many cases, delays may lead to more negative outcomes of the condition and greater costs associated with its treatment”, says Dr. Cheryl Rockman-Greenberg, Clinical Geneticist and Director of Metabolic Service, Genetics and Metabolism Program, Winnipeg Health Region.
In addition to providing helpful information about the field of genetics, the Genetics and Paediatric Health module provides links to reports and emerging research. The information will be updated regularly ensuring the resource remains timely and valuable for professionals and parents. For more information please go to: http://profile.cich.ca/en/index.php/chapter2 [1]
“The field of genetics is progressing very quickly and understanding the concepts and related implications is important. This module will provide health practitioners, administrators, educators, policy makers, parents and family members with background information, data and valuable insights to make informed decisions to improve health outcomes for children, youth and families”, says Dr. Robin Walker, Chair, Canadian Institute of Child Health, Co-Chair, CICH Profile National Advisory Group.
Funding for the Genetics and Paediatric Health module was provided by the Canadian Institute of Health Research, Institute of Human Development, Child and Youth Health.
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[1] http://profile.cich.ca/en/index.php/chapter2