Tag Archives: Jill Davies

by | December 20, 2012 · 8:05 AM

As a Genetic Counselor, Would You Go Public With Your Genome?

A Canadian version of the Personal Genome Project (PGP) was launched earlier this month. This is an initiative that, for one key reason, is likely to have a rippling effect for the genetic counseling profession. Modelled after and in collaboration with George Church and his group at Harvard, the project aims to recruit 100,000 volunteers to have their whole genome sequenced and posted publicly online for the advancement of research. As someone who has followed the US Personal Genome Project from the outset, I’m thrilled that Canadians will now be able to participate in this important research.

So why is the Canadian version of this project so important for genetic counselors specifically? Because the first participant (whom the media has aptly named Canuck One) to bravely volunteer to “bare her genomic soul” and forgo any form of anonymity while doing it, is a genetic counselor. Jill  Davies and her involvement with PGP-Canada was profiled in The Globe & Mail (one of Canada’s largest national newspapers) earlier this month.

Globe and Mail PGP-1

In full disclosure, Jill Davies is a close colleague and friend (and also a previous guest contributor to The DNA Exchange). The Medcan Clinic genetics program has been involved in the PGP-Canada project from the outset, and therefore it is no coincidence that Jill happens to be participant number 1. But it is also precisely the fact that she is a genetic counselor that the PGP team was keen to have Jill step up to the plate. Who knows the potential implications—clinical, ethical, legal and social—of whole genome sequencing better than a GC? Beyond immersing herself into her work (quite literally), Jill’s participation will undoubtedly help raise awareness of the genetic counseling profession, which is something that I think should be celebrated.

Not surprisingly, with the potential to have my own whole genome sequenced hitting closer to home, I’ve been thinking a lot about whether this is something I would go through with, and if not—why?

The Globe & Mail has done an excellent job in asking the general public this very same question. In conjunction with the official start of the PGP-Canada project, the newspaper launched a widespread interactive media series — The DNA Dilemma—running from December 8 to December 22. This is one of the biggest and most comprehensive genomics-related media series I’ve seen. It is really worth the look at the articles and commentary. They have even developed a genomics game: Win, Lose or Genome?

By far the most interesting component to the series for me is the Infographic-type Poll on whether people would choose to have their genomes sequenced. Of the 1000+ respondents so far, a whopping 80% say they would have sequencing, and 70% believe the benefits outweigh the risks (you can filter the results based on age, gender, location etc). As a genetic counselor I find these numbers fascinating (and surprisingly high).

Globe and Mail Poll

My hunch is that if we polled GCs specifically, this number would be lower. There are so many interesting questions about why this might be—is it because we are more informed? Is it because we are a self-selected group who are more attuned (and potentially concerned about) the ethical issues associated with genetics to begin with? If I had the skills to create such a beautifully intricate poll as the one above I would, but I’ll have to make do with the standard DNA Exchange poll to test my theory. So—what do you say? Would you participate in the PGP?

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by | March 16, 2010 · 8:15 PM

Guest Post: Putting GC into DTC

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.”

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by | January 4, 2010 · 8:33 PM

Learning from the Naturopathic Model

I recently sat down with Jill Davies, a genetic counselor who is doing some really interesting work with genomics and preventive medicine in the primary care setting.  I won’t get into the details here, as I am hoping Jill will describe her role in her own words on DNA Exchange in the next little while. But our meeting has my wheels turning and has given me some new found inspiration about future career possibilities.

Coincidentally, the evening before my meeting with Jill, I attended my first naturopathic medicine appointment. My new family doctor has a patient share with an in-house Naturopathic Doctor (ND), in which my electronically stored medical records can easily be shared between the two. I’ve always been a little curious about naturopathy, and the pure ease of this system provided the added boost to follow through and try it.

During my hour and a half appointment with the ND we discussed in detail my medical history, family history, health concerns and general health goals. My main reasons for seeking naturopathic services are:

  1. the prevention of disease
  2. optimizing my health

As I discussed these goals with the ND it struck me that these very same objectives could drive me to seek personal genome services. I’ve always thought about personal genomics from an academic perspective, and to my surprise, never really put myself in role of the consumer. I’ve certainly thought about the consumers, but always as some abstract group of people most commonly referred to “early adopters.” So for the first time I could envision these services not just as a DTC internet purchase or as a function of specialty medicine, but as part of the primary care setting.

It is not my intention here to debate the efficacy of nutrigenomic products (such as Carolyn’s The DNA Diet, for example) or even the use of genomics in naturopathic medicine, but instead present the current model of naturopathic medicine as a potential model for personal genome services.

Consider this:

People seek naturopathic medicine services for a number of personal reasons. They meet with a professional with specific training in naturopathic medicine, and discuss their concerns. The naturopathic doctor then uses whatever “tools” they feel are most useful to address those concerns. Sometimes the knowledge gained from this service will be used to compliment the patient’s primary medical care, and sometimes not. In settings with a patient-share system with a family doctor, any test results can be easily shared between the two providers to enhance patient care. Generally, the patient can claim at least part of the cost of naturopathic medicine services from their private health insurance plan.

If you read the paragraph above again and substitute “personal genome” for “naturopathic medicine” and “genetic counselor/geneticist” for “naturopathic doctor,” does this seem incredibly plausible to you? It sure does to me.

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(initially posted on herNaturehisNurture)

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