The use of genetics in healthcare is evolving rapidly, yet family doctors and other primary caregivers get little training in genetics. A new Ontario-based website aims to overcome this.
Innovations in genomic medicine are presenting new challenges for primary caregivers. What is the family doctor’s next step when a patient comes in who wants to get pregnant and recently took a “direct to consumer” genetic test and now fears that she is a carrier of cystic fibrosis? How should a family doctor advise a patient whose child has been diagnosed with Autism Spectrum Disorder and wants to know if recent discoveries about the genetic causes of ASD can be used for prenatal screening? Given that doctors receive only a few hours of training in genetics during medical school, most family doctors would respond – “Not sure.”
When surveyed, few Ontario family doctors were fully confident in their general understanding of genetics, in their abilities to counsel patients about genetic risk, in how to order genetic tests and in their awareness of genetic testing guidelines.
A new Ontario-based website, geneticseducation.ca, has been set up to help overcome this lack of genetic literacy. Created by “GEC-KO” (for “Genetics Education Canada – Knowledge Organization”), it acts as a single central Canadian resource of up-to-date genetic information for primary care doctors and other healthcare workers. The website provides education materials, connections to local resources as well as “point of care” tools to help family doctors in the clinic collect and interpret genetic information. The Family History Tool, for example, is a simple two page form that guides the caregiver to acquire a complete family history, including distinguishing between maternal and paternal lineages – a critical step in taking a complete history and one that is missing in most electronic medical record guides, according to Dr. June Carroll, one of the founders of the website.
But the website is not enough, according to Dr. Carroll. At a recent conference Dr. Carroll pointed out the need for a structured strategy for information dissemination supported by the more passive approaches such as the website. This would include augmenting EMRs with, for example, risk alerts, point of care tools in electronic form and decision aids. In addition to the new website, these tools will help caregivers apply existing genetic knowledge for better care of their patients, and will also allow rapid application of future genetic discoveries.
By: Kathryn Deuchars, Director, Ontario Personalized Medicine Network