by Dr. Hsien-Hsien Lei
Posted April 8, 2008 in DNA Testing, Jobs Involving DNA, Personalities with DNA
Personal genomics company Navigenics will be hosting DNANYC in New York City starting today. The event runs from April 8 through April 17 and is meant to “celebrate the promise of genetic health.” Navigenics is now open for business and you can become a “member” for $2, 500 including first year’s subscription. The subsequent ongoing subscription rate is $250 per year.
From the press release:
Navigenics, a privately held personalized health services company, today launched Navigenics(TM) Health Compass, a new service that combines a genetic health assessment with the latest discoveries in science and medicine as well as genetic counseling. The service gives individuals information on their chances of developing up to 18 common conditions, so that with their physicians, they can obtain earlier diagnosis, delay onset or prevent the conditions altogether.
It’s a great pleasure today to share my interview with Elissa Levin, Navigenics Genetic Counseling Program Director. I’ve known Elissa since her days at DNA Direct and I think you’ll agree that her enthusiasm and knowledge of the genetic testing industry make her uniquely qualified.
Hsien Lei: At Eye on DNA, I regularly receive emails asking about career options in genetics. Can you tell us about how you came to be a genetic counselor? What do you like most about the job? What are the challenges?
Elissa Levin: I first learned about genetic counseling (GC) while I was in college studying biology and psychology. I did a fantastic summer rotation in a cytogenetics lab at CHOP, where I completely fell in love with genetics. The difficulty was that while I wanted to be connected to the basic science, I also knew that I wanted to work directly with people. Then I discovered the field of genetic counseling and it seemed like the perfect hybrid.
As I began my training as a genetic counselor, the Internet was becoming a growing information resource and seemed like a natural means of providing genetic counseling services in the future. Then, while working in General Genetics at UCSF, this concept was further reinforced as access to genetics clinics in northern California became more difficult â€“ clinics were closing, people were waiting months for appointments, traveling long distances, and some were unable to afford the time off of work, child care, travel costs, etcâ€¦ More of our pre-visit and follow-up genetic counseling services were being provided by phone (which, of course, we could not bill for). Basically, the lack of access to genetic services obviated the need to identify alternative methods for delivering genetic counseling services.
At that time an opportunity arose to establish a Web-based genetic counseling service at DNA Direct that mirrored traditional GC services. Several years later, my new challenge at Navigenics is to take my â€œvirtual genetic counselingâ€ experience and apply it to a new realm of testing â€“ whole-genome risk assessment â€“ in a professional and responsible way.
What I like most about being a GC is also its greatest challenge â€“ working with people to help them understand complex information and what it means to them and to their family. This means staying on top of new technologies, research, risk communication strategies, and creating an infrastructure to provide accurate information responsibly.
Hsien: With the number of online personal genomics companies increasing, how do you think this will affect the demand for genetic counselors? How do you think personal genomics will change a genetic counselor’s job description?
Elissa: Genomic risk assessment does not leave out the genetic counselor. In my opinion, it will actually increase the demand for genetic counselors over the coming years. In the past decade or so the role of the GC has expanded greatly â€“ out of the prenatal and pediatric clinics and into a wide range of subspecialties, research endeavors, industry, and more. I see the coming years as a continuum of this trend, but a critical one in which the opportunity to integrate genetic counseling services into primary care settings and addressing common, complex disease (as opposed to rare disease) will increase exponentially.
It is well known that most healthcare providers are not comfortable with providing genetic information and interpretation for their patients. That is where genetic counselors become such critical players in this evolving field of genetic and genomic medicine.
GCs already have the core skills to facilitate the transition of genomic discovery into a clinical setting â€“ communicating risk information and complex genetic concepts, facilitating decision-making, and integrating personal and family medical history.
I see the field of genomic medicine as being a great opportunity for GCs, further underscoring the value of our profession as a key component of a healthcare team.
Hsien: Companies like Navigenics and DNA Direct have made genetic counseling a core offering while others like 23andMe and deCODEme have not. Do you think genetic counseling is dispensible if there’s quality online content? What do you think are the pitfalls of not offering genetic counseling to customers?
Elissa: We all know that genetics is complex and that different people have different needs â€“ some need more support in the basics, decision-making, interpretation while some need less. From my experience in â€œvirtualâ€ genetic counseling, I strongly believe that no matter how high quality the content and how interactive the tools, being able to speak with an actual, trained genetics professional makes all the difference.
Personally, Iâ€™m thrilled to continue be part of companies that value the role of the genetic counselor, since Navigenics offers GC as a core component of our services. Companies that do not offer GC services are likely to create an environment where consumers are driven to healthcare providers who may not be equipped to interpret this type of information. (This is one reason why Navigenics is committed to developing consumer-friendly tools as well as resources to educate physicians, nurses, PAs, and other providers.)
That is why I view the services offered by companies like Navigenics and DNA Direct to be a model for offering professional services in the future. The key is to set industry standards to offer accurate, responsible testing and support services to patients and providers alike. Our commitment to this goal, with GC services included as a core component of testing, is why weâ€™re actively organizing a forum to address industry standards this fall in Washington DC to include heads of industry, academia, ethics, and policy (please see our press release on April 8).
Hsien: What kind of people do you think will be the first to sign up for Navigenics?
Elissa: It is hard to say, but there are so many people who are interested in learning more about who they are on a genetic level. There is a growing trend towards people becoming more proactive about their health and wellness. Over the past few years, Iâ€™ve been hearing from an increasing number of people who want to know what health conditions they may be more likely to develop, or not, down the road.
I believe it is safe to say that those who initially choose to take the Navigenics Health Compass test will be those who are looking to maximize their health and wellness and focus their healthcare needs. As this type of testing is not yet reimbursed by insurers, initially this will likely be those who have the ability to spend healthcare dollars out of pocket. As with most new products and services, over time this type of testing will become much more accessible to larger populations.
Hsien: Given the cost, why should people get their whole genomes scanned rather than selecting a few specific genetic tests as follow-up to red flags in their family history?
Elissa: There are actually several reasons why whole genome scans can be a great tool for people. First, relying solely on family history is not a complete story for many people, and some have no such information available. Even for those who have access to family history, what we know with certainty about our familyâ€™s medical history can leave a lot to be desired.
Second, if you look at the cost of traditional, indication-specific genetic tests, the costs range from about a hundred dollars to thousands. When you look at the amount of genetic information you receive along with the number of health conditions, it becomes a very cost-effective endeavor.
Finally, the amount of information someone gets from a single genome scan is incredible! What we can provide today is a snapshot of information that has been validated in scientific studies to date. Over time, the same fundamental test will continue to provide information about new health conditions. I think itâ€™s also important to point out that Navigenics also provides ongoing genetic counseling services for anyone who chooses to have a genome-wide risk assessment. Therefore, one test today can yield an ongoing supply of reliable, genetic health-related information.
Thank you, Elissa!
Are any Eye on DNA readers Navigenics Health Compass members? Please share your story in the comments or email me!
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