Jill Davies is a Genetic Counsellor and the Director of Genetics at the Medcan Clinic, Canada’s leading preventive health care clinic. She has over 10 years of experience in genetic counseling and has worked in partnership with Dr. Lea Velsher (medical geneticist) to develop a preventive genetic service at Medcan. Read her full bio here.
We’ve spent a lot of time discussing why DTC genetic testing shouldn’t be available, but I think we’re beginning to come to terms with the fact that consumer genetic testing is here to stay. Rather than criticize, why don’t we look at embracing the technology and building a framework around how it can work?
For the past 4 years, I have worked at a private medical clinic in Canada . More specifically, I have worked at a preventive healthcare clinic, where we focus not on health care as an expense, but as an investment. Believe it or not, there is a large market for preventive health care. This growing area of medicine aims to focus on detecting disease early, when there is opportunity for treatment and improved outcomes. A large part of this concept is health education, of which genetics education – understanding how genetic factors play a role in overall risk for disease – is often overlooked.
Family history is of course an important component of understanding one’s potential genetic risk and this is still the best place to begin any genetic assessment. When I started at Medcan more than four years ago, my job was to meet with people as part of their annual medical and help them to understand their genetic risk based on family history. The vast majority of conditions that people were concerned about were complex diseases, like cancer, heart disease and Alzheimer’s. Conditions where I might rarely see an indication of inherited risk, but most often spent my time counseling around risk factors for common diseases. Although I knew the information we were providing was important, only a portion of clients found value in this genetics education piece. Many others found the information to be lacking – they wanted something more tangible. They wanted genetic testing.
About a year ago, we started having discussions with Navigenics, a company who employs genetic counselors and who’s SNP panel is carefully vetted by a large team of scientists and geneticists. Yes, I spent some time researching the other DTC companies, but it quickly became clear to me as a genetic counselor that only one company had figured out the right formula – as their slogan says “There’s DNA, and then there’s what you do with it”. For those of you who haven’t had the opportunity to see a full Navigenics patient report, I encourage you to try to get your hands on one – its good!
We took a look at this report and thought “how can we build on this?” As we’ve already established, there is clearly a market for preventive health and my experience was definitely telling me that people wanted more than just a family history review. So why not combine family history, with personal genome testing technology? Better yet, why not offer pre- and post-test genetic counseling sessions too? This way, individuals have the opportunity to learn about the test in advance (risks, benefits, limitations, insurance issues) and also have a qualified professional to walk through the results and help interpret those results in the context of the family and medical history.
The biggest complaint about DTC testing to date has been the lack of qualified professionals to help individuals understand what the information means. Although there are still limitations to our understanding of the clinical application, I don’t think we give consumers enough credit in their understanding of probability and risk stratification. And I don’t think we give ourselves enough credit in our ability to counsel around these complex issues. We’ve been doing it for years. This is just a new framework in which to use our skills.
The uptake of our service has been very successful with our clients. I’ll be the first to point out that we have a fairly unique patient population – high income earners who are already interested in proactively managing their health. Anecdotal trends so far though indicate a low level of anxiety and a high degree of satisfaction with our program. A program which allows the technology provided in a DTC test to be made available in the framework of genetics “best practice.”