Category Archives: Allie Janson Hazell

by | August 5, 2010 · 11:03 PM

Healthcare, Bad Health and Health 2.0

Last year I gave a mini-presentation to a small group of genetic counselors titled Health 2.0: What It Is, and Why We Should Know About It. I wish I could have just shown this clip of Esther Dyson, who provides a much more concise and current overview of the subject. Take a look (via The Health Care Blog)– it is well worth the 3 minutes of your day.

Esther discusses the current health ecosystem as being comprised of three different markets: Healthcare, Bad Health and Health 2.0. While not directly related to genetic counseling, I think this is an important concept to be aware of.  And one that seems particularly relevant given the current climate of the FDA – DTC regulation debate.

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by | June 28, 2010 · 10:54 PM

The Genetic Counseling Job Search

Last week, I began my third maternity leave contract position. For the most part, I have been very lucky in my career so far. In 2008, I accepted a 9-month maternity leave contract right out of school. The position was posted as part-time (3 days per week), but on my second day it became full time. So I could breathe easy for a while knowing that I could count on 9 months of a full-time paycheck. Beyond the financial security, I also lucked out in that the clinic in which I work is perfectly suited to my career interests and preferred work culture. A few months after I started working, one of the counselors announced she was pregnant, due only a couple of weeks after my contract was set to expire. And thus I began my second year of my genetic counseling position (maternity leave in Ontario is one full year). And then, a couple months before my second contract was up a colleague again announced she was expecting. And here I am, beginning year three.

Genetic Counseling: The Career of the Future

We have all seen the lists and media reports that consistently put genetic counseling in the category of top careers for the 21st century.  When thinking about genetic counseling as a career, I did my due diligence, as I am sure most of us did, and collected anecdotal information about the availability of positions beyond graduation. I learned that if you’re flexible in your location, you can find a job. But if you’re set on working in a specific region, it might be more difficult.

Any student who graduated in 2008, or more significantly 2009 or 2010, knows first-hand that the global recession has done little to help in the area of job seeking and creation. From my experience, in Toronto since 2008 there have been a handful of genetic counseling contract positions that have become available. However, in the past 2 years, there has only been one Toronto-based full time permanent genetic counseling job posting. This posting came out a couple of weeks ago, and is for a relatively unknown and questionable private genetic testing company.

What’s a new GC to do?

While historically there may have been stigma around genetic counselors taking on non-traditional roles, my sense is that this sentiment is now pretty obsolete. However, I do think there is a big difference between an experienced GC moving to a non-traditional role and a new graduate taking on such a role right out of school. Personally, I’d consider a less traditional opportunity in the future, but I must admit that I feel a lot of pressure to get some solid experience in a traditional genetics clinic before thinking about moving elsewhere. From speaking with friends, colleagues and other new graduates I know I am not alone in this thinking. There is a fear of being stigmatized and a fear that taking on a non-traditional role out of school will make it difficult to get a more traditional GC job down the road.

Perhaps this is the downfall of such a specialized profession. GC students spend 2 years getting prepared for one very specific role, only to find that they aren’t able to secure this very specialized position in their city of choice. These young professionals have no choice but to look beyond the more traditional genetics clinics. On the other hand, perhaps the job limitations are a blessing in disguise for our profession. We have young and bright minds heading into the workforce and creating new opportunities for themselves and hopefully paving the way for others.

For me, even though I have been blessed with two, going on three years of wonderful and challenging full-time work right out of school, I do struggle a little with living from contract to contract. This has prevented me from being able to plan ahead in significant ways, such as buying a house and committing to a mortgage. My hope is that at some point I will be filling my own position, rather than someone else’s.

I write about the Toronto GC job market because that is what I know. But I recognize that the job market varies considerably across North America and internationally. What has been your experience finding a job out of school? Have you had to create your own opportunity? If so, how did you go about doing it?

Do you think it is necessary to have some traditional genetic counseling experience in order to be taken seriously as a genetic counselor?

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by | May 14, 2010 · 7:14 AM

Genetic tests now sold in drugstores! Or not.

as posted on herNaturehisNurture

Well, it has been quite a week in the world of genetic testing! For those who haven’t been following the gene drama (or haven’t been able to keep up), I’ve provided a summary of the week’s events below.

Monday, May 10 Pathway Genomics’ test is considered a ‘device’ by FDA

The FDA Office of In Vitro Diagnostic Device Evaluation and Safety, sends a letter to James Plante, CEO of DTC company Pathway Genomics Corporation, pointing out that Pathway’s “Genetics Health Report” product appears to meet the definition of “device,” and therefore requires an FDA clearance/approval number. They request that their approval number be provided. [Of note, Pathway DTC genomic testing has been available online since July 2009].

Tuesday, May 11 Washington Post runs story about gene tests being sold in drugstores

The Washington post runs the story that personal genomic testing company Pathway Genomics was getting set to offer their genetic testing kits at Walgreen drugstores across the country.

Beginning Friday, shoppers in search of toothpaste, deodorant and laxatives at more than 6,000 drugstores across the nation will be able to pick up something new: a test to scan their genes for a propensity for Alzheimer’s disease, breast cancer, diabetes and other ailments.

The NSGC promptly responds, issuing this Policy Statement (pdf):

“Distributing genetic testing through pharmacies will expose more people to its availability. However, people should first meet with a genetic counselor to determine whether genetic testing is right for them and to prepare for what they might learn,” said Elizabeth Kearney, NSGC’s president.

Daniel Vorhaus of the Genomics Law Report was quick to comment on the news, and published an impressive compilation of media and blogger reactions to the developing story.

Wednesday, May 12 Walgreens revokes decision to sell Pathway’s test in stores

Media outlets continue to follow the story, and FDA officials become increasingly vocal about their lack of support for the retail genetic test kit. Late Wednesday night, news breaks that Walgreens has decided they are revoking their decision to stock the genetic testing kits in stores.

In a statement, Michael Polzin, a Walgreen spokesman said, “in light of the FDA contacting Pathway Genomics about its genetic test kit and anticipated ongoing discussions between the two parties, we’ve elected not to move forward with offering the Pathway product to our customers until we have further clarity on this matter.”

Thursday, May 13 Pathway Genomics and others respond

Pathway Genomics issues a press statement acknowledging the weeks events and the genetic counselling services they provide:

We respect and understand Walgreens’ decision and we are communicating with the FDA about the Pathway Genomics InsightTM collection kit…We believe it is very important that anyone interested in a personal genetic test understand the information that will be contained in his or her report. That is why we have on staff Board certified/eligible physicians and genetic counselors that are available to speak with customers about their reports. We also encourage anyone considering purchasing a Pathway product to speak with our counselors.

Others continue to weigh in on the issue. Notably, Dan Vorhaus helps elucidate some of the complex issues surrounding regulation of direct-to-consumer gene testing and points out that personal genome tests are already available through retail outlets, such as 23andMe tests being sold through Amazon.com. The NSGC public policy blog provides a good summary of the issue from a genetic counselor perspective.

Friday, May 14

So here we are, Friday morning, the day that Pathway’s tests were scheduled to hit drugstore shelves. But instead of curious consumers flocking (or not flocking) to their local Walgreens, we are instead right back in the middle of a DTC regulation debate. A debate that seems to me to be incredibly reminiscent of June 2008, when the California department of Public Health issued “cease and desist” orders against 13 DTC companies. I look forward to watching how this plays out.

—-

Beyond the actual events of this week, what has been so incredible to me is the quick response and coverage of this story within the genetic counseling community. Because I don’t work in a position where I can monitor twitter, I have relied heavily on the NSGC listserv this week in keeping up on the breaking news. So a big thank you to all those who kept the community up-to-date using this private forum. And I’m impressed with the speed at which the NSGC position statement and public policy blog post were put together. If this same situation had occurred a year ago, I highly doubt the public response from the GC community would not have been so urgent or visible.

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by | May 3, 2010 · 7:01 AM

Listening to our patients online

When I was in the first semester of my genetic counseling program, a family friend met with a GC for advanced maternal age counseling. This friend was completely dissatisfied with the experience, claiming that the counselor tried to talk her into doing an amniocentesis and only talked about the option of terminating affected pregnancies. I knew there was no way the GC (who remained anonymous to me) would have tried to talk the patient into choosing an amnio, and I knew she would have presented multiple options about what to do with the information. But, regardless of the GCs intention to present the information in a straightforward and unbiased manner, it had clearly not been perceived that way. A big problem with this scenario is that the GC involved never knew how the patient perceived the information that she relayed.

About a year ago, I set up a google alert for the terms “genetic counselor” and “genetic counseling.” Since then I’ve had patient recounts of their GC experiences delivered to my inbox every week. What an incredible resource this has turned out to be.  For example, I recently read a woman’s blog post titled “Details, Follow-up, Ultrasounds, and the Awfully Scary Genetic Counselor.” As the woman describes:

We entered the building and I filled out the appropriate paperwork in the small office, then a woman came out to get us. She introduced herself as a genetic counselor who would do a consult with us. I’d always wondered what a genetic counselor does. After asking us in a you-are-so-fragile tone, “Do you know why you are here?” she took family, healthy, and pregnancy histories and spent the next twenty minutes scaring the crap out of us.
She continues,
Diseases! Defects! Disorders! SO MUCH CAN GO WRONG WITH ANY BABY OMG! Risks! Tests! Fractions! Screenings! It was quite unsettling and a bit disturbing. As Mike said later, “She scared me out of ever having children again.” It seemed as though the point-of-view was: Unless proven otherwise, every baby has a problem.

In reading this, I remember distinctly having the exact same feeling while I was in school.  I remember talking with my classmates, all of us thinking the same thing: “with all the things that can go wrong, it’s a wonder a healthy baby is ever born.” I was also struck by how I hadn’t thought about this feeling in quite a while. It was an important reminder for me.

While the examples I give above are both somewhat negative experiences, there are positive patient accounts out there too. What better way for students to learn, teachers to train and experienced GCs to grow professionally than to read first-hand experiences from our patients?

—

A growing number of professions are now listening to their consumers online conversations, and learning from them:

Listening means finding the online social spaces where your audience is already communicating, monitoring the conversations that happen there, and gathering intelligence you can use to better understand your audience. Because social media is open and public by nature, listening is not only welcome — it’s expected.

So my questions to the GC community are:

  1. Should we be listening to these conversations?
  2. If so, how can we best harness this information and use it as a learning resource?

 

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by | March 22, 2010 · 7:58 PM

Counsyl Poll: The Results are in!

A few weeks ago we implemented a poll to go along with Bob and Laura’s posts on the new “universal genetic test” being offered by the company Counsyl.

We asked readers to vote on three different statements or present their own statement about the service. We had a total of 68 votes. Here is what we found:

  • The most common response: 44% of readers believe that the test should only be offered through a medical professional
  • Many respondents believe that the test is a “big step forward for couples considering pregnancy” (35%)
  • 12% of respondents feel that the test is “dangerously oversold“

A small subset of readers chose to add their own response (6 total):

  • Three of these readers believe the test is a good resource, but took issue with the marketing of the product, calling it “alarming” and “inappropriate”
  • Another respondent believes this test “represents the future of genetic testing“
  • Two respondents were particularly concerned about the detection rates quoted by the website

It is important to keep in mind that this poll was simply a fun exercise. We did not restrict the number of times a reader could vote and did not perform any statistical analysis of the results.

In any case, I am not particularly surprised by the outcome. Generally, readers of the DNA Exchange (a.k.a. genetic counsellors) believe that this info should be given in the context of genetic counselling by a medical professional. Makes sense.

I voted for the “big step forward” answer. Personally, I don’t have a problem with this particular test being ordered directly by the consumer. But, I do believe that a medical professional should be available for consultation if the consumer is seeking it. And to their credit, Counsyl has several avenues on their site for a consumer to consult a genetic counselor either pre- or post- testing. It is interesting to think about how I might have voted differently a year or two ago.

Care to share your answer here?

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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.

_____________________

(initially posted on herNaturehisNurture)

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by | January 1, 2010 · 2:22 PM

Happy New Year from DNA Exchange!

When we started this blog a little over 7 months ago, we had no idea what sort of response we would get.  The morning that DNA Exchange went live and we sent the initial note out to the listserv, I was really nervous about how it would be received. My fears were clearly unfounded; I’ve been excited and encouraged by the overwhelmingly positive response from our community, with an average of over 4000 visits to the site each month.  Thank you to all of you who come back every week to read about and weigh in on the issues that we choose to highlight here.

In 2010 the goal of DNA Exchange remains the same: the promotion of public discussion about genetics and genetic counseling related issues. We hope that this discussion will continue to grow within the GC community and that we’ll see a host of new guest bloggers in the new year. We also aim to have some other stakeholders provide guest posts in the upcoming months, in order to further broaden the conversation.

We are planning a few small changes for the new year:

  • We have a new domain name: www.theDNAexchange.com. However, our old domain (www.dnaexchange.wordpress.com) will still redirect you here.
  • We are planning a new monthly feature called “GC Alerts” in which we will highlight what is being said about genetic counselors and genetic counseling on the web.
  • Finally, we are sending out an open call for a new header photo for the site. If you have an image that you think would work well for our blog header, please pass it along.

Happy and healthy new year to all. Thanks again for supporting what we do here. If you have any suggestions about how we can make things better, we are all ears.

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by | November 23, 2009 · 8:07 AM

Communication in the Genomic Era

Last month the Genomics Law Report, a blog about the “intersection of genomics, personalized medicine and the law,” launched a series called “What ELSI is New?” They invited guest commentaries from various disciplines to provide a short post on what they felt was the most important ELSI issue facing the fields of genomics and personalized medicine. If you haven’t had a chance to peruse the series of commentaries, I’d definitely recommend it. I love the idea of looking at an issue from 360 degrees.

In full disclosure, I was very excited to be invited to contribute to this series. And you can find contributions from familiar players such as the NSGC Board of directors and Sharon Terry of the Genetic Alliance here and here. In considering the series in it’s entirety, I was struck by how many submissions centered on communication: between scientists, physicians, patients, the public. Below are a couple of excerpts I found particularly relevant to the field of genetic counseling.

From Chris Gunter of the HudsonAlpha Institute for Biotechnology:

I am struck by the absolute hunger of the public to understand genomics and personalized medicine… I propose our field engage in our own form of personalization: using education and media in all forms to convert the energy of the public into an army for science…

From Mathew Harper of Forbes:

…if genomics is really going to impact medicine, we’re going to have to start bridging the gap between the companies and scientists doing this early work and the traditional medical establishment…23andMe’s big contribution has been to start this conversation, but we’re still a long way from figuring out how genomics will fit into medical culture, no less into the regulatory framework.

From Zoe Mitchell and Dr. Gavin Harper of Oxford Nanopore Technologies:

As we enter an era of personalized, genomic medicine, the understanding and communication of probabilities is likely to be a stumbling block, not only for the public but for clinicians too…How to provide context, interpretation and counselling around these complex sets of probabilities is a new challenge in statistics, ethics and psychology.

I realize that the importance of communication isn’t news to anyone in the genetic counseling world. However, I like that it seems to be a focal point for the early thought leaders in the genomic era. This, in turn, will hopefully make our job of ensuring that our voice is heard in this discussion, just a little bit easier.

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by | October 15, 2009 · 7:11 AM

“Designer Genes”

I posted this on herNaturehisNurture a couple of days ago, but thought you would all get a kick out of it as well. An image found via popurls.com:

“How Genetics Works”

How Genetics Works

Photo by Rene Maltete, 1930

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by | October 7, 2009 · 8:45 AM

Misrepresentation of Genetics on TV: Harmless or Harmful?

Most medical TV dramas have, at some point, featured a genetics-related plot line. In a “Grey’s Anatomy” episode,  three siblings struggle with the decision to have prophylactic gastrectomy  after testing positive for a known familial gastric cancer mutation. In that same episode, a high school student in a marching band is “cured” of her seizure disorder after be correctly diagnosed with ARVC. And during an episode of “House,” one of the residents draws her own blood, runs it through a machine and quickly receives a print out confirming that she carries a familial Huntington’s disease mutation. Notably, she tested herself only after extensive bullying from her physician boss.

Until recently,  I wrote these scenarios off as interesting, humorous and somewhat frustrating misrepresentations of genetics in medicine. However, a recent lecture I heard by the Ontario Deputy Chief Coroner got me thinking otherwise. As she explained, misrepresentations of the work of a Coroner by TV programs are a huge detriment to the work of their office and in turn the relationship between the Coroner and families. Families are often distraught when the Coroner is unable to provide a specific time of death (e.g. 2:23pm), a quick explanation of cause of death and timely autopsy report. This got me thinking about the role of TV in my everyday interaction with patients. Do these misrepresentations signifantly impact my counselor-patient relationship?

The most obvious misperception that I encounter on a daily basis is the amount of time it takes to receive genetic test results. People are shocked when they learn their results may take anywhere between one and three months to receive. And I often spend a significant amount of time downplaying the “absoluteness” of genetic information: a negative genetic test result doesn’t rule out a diagnosis and a positive predictive test result doesn’t guarantee the onset of a future medical issue. Not surprisingly,  survey’s have shown that diseases featured on “Grey’s Anatomy” have increased the public’s knowledge of a condition.

So, in an ideal world, representing medical genetics accurately in TV programming could possibly enhance the genetic counseling appointment. We all know that there are enough interesting and ethically charged stories in genetics to work with. Any TV producers out there care to take this one on?

Then again, I supposed waiting three months for test results wouldn’t make for the most exhilarating television.

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