Tag Archives: NSGC

What Genetic Counselors are Talking About

Last week, I attended the National Society of Genetic Counselors (NSGC) Annual Education Conference in Boston. Although I attended talks on a variety of subjects, where possible I chose sessions focused on new genomics technologies and associated issues. There were some common threads tying these discussions together beyond ‘genomics’ itself. Here’s a quick summary of some of the things I observed and learned.

1. Secondary, Ancillary, Incidental – Oh my!

It is no surprise that discussions around the use of Whole Genome Sequencing (WGS) and Whole Exome Sequencing (WES) universally include the question of what to do with the “extra” data—those pieces of information we weren’t looking for, but happened to find. What was surprising are the differences in the terminology we use to describe these extra pieces of data. Jessica Everett, a GC from the University of Michigan Mi-OncoSeq project explained that confusion over this terminology lead her team to decide that they would universally refer to an incidental finding as an unintended piece of information that “falls into your lap” and a secondary finding is extra information you end up finding out, but have to look for.

There are likely some official definitions and designations that already exist here. But it is apparent that we as a GC community currently don’t have a consensus on the nomenclature around this issue.

2. GCs don’t need new skills, but rather need to apply our skills in new ways.

This type of thinking is music to my ears—I love the challenge of applying our skills in new and unique ways. The GC role in pharmacogenomic testing specifically was a sub-theme here. I heard multiple genetic counselors who work in the realm of pharmacogenomic testing say that while they initially believed their role with patients undergoing testing for pharmacogenomic purposes would be minimal, the applicability of our traditional skills and opportunity to provide value to both patients and physicians was far greater than they anticipated. 

3. “Scalability” of the Genomic counseling session

The sheer volume of information and amount of time required to consent patients for WES/WGS technologies was routinely cited as a barrier to genetic counseling in the genomic era. In some cases, GCs plan for a 2+ hour pre-test counseling session, and in most cases there are multiple visits or contacts before testing is initiated. There was also alot of discussion about how best to inform patients about the various types of information that can be learned through genome sequencing technologies. Bioethicist Scott Kim (also from the Mi-OncoSeq project) made a good case for a ‘flexible default’ model for informed consent in these situations.

Consistently GCs commented that when asked ‘do you want to know everything?’ patients and research participants will almost always reply ‘yes– of course I want to know everything!’ However, the use of specific scenarios or examples seems to be required in order to elicit a more meaningful discussion about potential results, and what information patients will decide to opt out of receiving. (This is a topic I’ve previously written about.)

4. Collaboration

Although this may be the least exciting or surprising underlying theme, it is likely the most important. Almost every lecture concluded with a slide highlighting the importance of a collaborative and multidisciplinary approach to genomic testing.

As always, I’d love to hear about others’ reactions and impressions from this year’s AEC. Please feel free to share, below.

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Tweeting: A New Dimension to the AEC

I wanted to put together a quick post mid-AEC to highlight a new (and for many, invisible) dimension to this year’s conference.

For those of you attending the NSGC Annual Education Conference in Boston this week, you’re likely keeping busy hopping between talks, committee meetings, networking functions and catching up with old friends and colleagues. You’re listening to experts in our field discuss new and relevant topics in our profession, and exchanging your thoughts on the lectures with the person you are sitting with.

If you aren’t able to attend the AEC this year, you may have perused the preliminary program and made note of the topics, but that may be the extent of your connection to the AEC content.

But, what if those of you not attending could check-in on the ongoing conversations happening at the AEC? What if you could listen in on the highlights from the talks, and hear attendees reactions to the material? You can! Twitter allows instant access to the conference dialogue. For the first time, the conference organizers have designated a Twitter hashtag (#AEC2012) to  help ‘organize’ or ‘amalgamate’ the online conference conversation. Whether you have a twitter account or not– just click on one of the following links in order to access real-time AEC reactions and discussions:

This has benefit not only for non-attendees. As an attendee, Twitter has enhanced the conference experience for me immensely. I love being able to “listen” to others reaction to the same material I am processing. It is like being able to read someone’s conference notes over their shoulder. I’m always surprised by the difference in what others take away from the same information that I am listening to. And I like being able to silently interact with other conference goers (usually strangers) in order to gain access to another perspective.

Laura Hercher (@laurahercher) and I (@alliejanson and @GenoScapeGC) are both at the conference and actively tweeting throughout the day. We are also occasionally tweeting from the @theDNAExchange account. There are a numer of other notable GC tweeters here as well: @ASanSmith, @GeneticCouns and @dcheatherc.

Whether you’re attending the conference or tuning in from afar, I encourage you to join in!

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