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check-in: NSGC Atlanta 2009

November 16, 2009 Leave a comment

just returned from the NSGC Annual Education Conference in Atlanta, Georgia. was able to meet a lot of new people, hear from a lot of new people, and take in all that is the annual conference.

i have to say the best part of the conference was seeing so many of the people i’ve worked with in the past, old classmates, and all these awesome genetic counselors and speakers that i’ve heard about over the past few years in one place. slyly peering at nametags and then once i figure out they’re someone important, whispering to classmates and friends to point out the awesome gc that just ignored me by texting on their iphone… guess they’re “real” people too, right?

catching up and networking aside, it helps to see what the current interests of others in the genetic counseling field as it currently stands (well, perhaps a few months behind the times given that submissions for abstracts, speakers, sessions are done in advance). attended the pre-conference symposium on counseling for genomic medicine. what was perhaps the most interesting was hearing about current models of practice and research experiences coming from Navigenics, Coriell Institute, Duke, and the Cleveland Clinic.

other interesting sessions included longer talks about addressing the need for genetic counselor involvement in training primary care providers (specifically PAs and NPs), and learning techniques to implement effective strategies to do those (basically, cut to the chase and give them just the information they need, when they need it).

another session spoke of developing genetic awareness campaigns and the different avenues genetic counselors can integrate into creating a media-based campaign to increase the general public’s knowledge of genetics, genetic counseling, or genetics services.

smaller meetings and talks were just as useful. attending the special interest group meetings really showed me how a lot of awesome projects happen on the SIG level, and that there are tons of opportunities to be a part of NSGC and those projects, on a volunteer level.

it’s really amazing how much involvement some individuals have in this organization, and the great things that come out of it.

it was nice seeing students/recent grads from different programs, too, that i’ve heard about, communicated with while writing my Perspectives article, and through fellow classmates and friends.

Atlanta was a blast as well. got to hit up some southern home cooking at The Colonnade, get some gourmet burgers and liquid nitrogen milkshakes from Flip Burger Boutique, and explore some fun neighborhoods and bars around the city, all thanks to my former classmate’s Zipcar membership.

all-in-all, it was a great time. learn lots, meet a lot of people, eat well, and play hard. it’s all in a long-weekend’s work 🙂 oh, and got some networking in there to boot and am now rethinking/reanalyzing my interests for my future career.

let’s just say i’m very intrigued by the intermingling of common complex disease, tons of need for genetics health education that incorporates the skills i’ve learned from school of public health, and one-on-one counseling that incorporates face-to-face as well as technology in the ways it should be better utilized.

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NIH FHx Conference

August 21, 2009 1 comment

I’m leaving today to attend the NIH State-of-the-Science Conference coming up next week. There’s an amazing list of speakers on the agenda (Guttmacher, Khoury, Acheson, Rubinstein, Sharon Terry, Colleen McBride) and in all their short speaking sessions, it’ll be interesting hearing the import of family history in primary care settings.

This’ll be an awesome experience seeing how to best expand and come to consensus on one of the best medical, clinical, genetic, public health tool, really across all disciplines, to assess extent of genetic disease and inheritance. I’m sure many other important people will also be attending.

I’ll be taking notes and reporting back to my program for journal club. Should be exciting, plus I’ll get to see one of my old classmates who’s moved on toward real-life! Let’s hope they have internet so I can update as I go along!

Find more info at:

http://consensus.nih.gov/2009/familyhistory.htm

Supposedly the NSGC president, Steve Keiles, will be live-twittering during the event. Check it out:
http://twitter.com/nsgc_org
via: http://nsgcpresident.blogspot.com/2009/08/nih-consensus-development-program.html

Mr. Gene Sherpa has a few things to sy about this too:
http://thegenesherpa.blogspot.com/2009/08/family-history-state-of-science.html

UPDATE: 8/25/09

Phew, okay, so after a day and a half of nonstop talks and discussions, sounds like there’s a whole lot of ways to look at family history in general practice settings, a whole lot of research that still needs to be done, and not a lot of research that has been done to effectively analyze the procedures, processes, and outcomes of the family history as a tool.

A few key remarks (among my 40 pages of typed notes..) that I thought stood out from the wonderful array of speakers included:

Per Dr. Maren Scheuner:
The Red Flags of Family History include:

  • early age at onset
  • multifocal disease or severe phenotypes
  • 2+ closely related and affected family members
  • 2+ generations with affected family members,
  • disease in the less often affected sex (in the case of heart disease or breast ca.)
  • and patterns suggestive of a known mendelian disorder

These are great and all, but they look awfully similar to the red flags that I talk about in genetic counseling when.. oh, right, evaluating a family history!

There was the idea of stratification of risk into multiple categories of Weak, Moderate, and Strong, that Dr. Scheuner brought up, and then many other speakers touched on. Finding algorithms for determining process outcomes based on each of these family history risk stratification levels seemed a key component of moving family history data into standardized care.

Dr. Paula Yoon made the important point that family history of common conditions, as a tool, performs well for populations, but poorly for the individual. This is, again, not too surprising given the risks we see aren’t quite as black-and-white as we expect, and, to bring it to a counseling standpoint, having disease and not having disease can sometimes be interpreted as very black-and-white to clients, patients.

Dr. Louise Acheson pointed out that good prevention, good surveillance, will over a short period of a few generations, render the family history potentially useless. While it may seem great that families may eventually no longer have manifest disease due to great prevention efforts, the multifactorial elements underlying disease will still be present (especially the genetic components) in future individuals and there’s a need to include biomarkers and disease precursors in the evaluation of family history as these assessments move forward.

Dr. Wendy Rubinstein, on a very very peripheral note, brought up her analysis of the CDC’s Family Healthware experience of using a family history screening tool, and emphasized the need to avoid the word “genetic” in communicating with consumers. I guess subconsciously I’d thought about this and the mental associations/implications with words that we as GCs think are simple, that can occur with any given word. Perhaps this is especially important when trying to create tools that will be applicable and can be related to mixed population groups as a whole.

Dr. Ted Adams talked a bit about the Utah State experience (that’s gone on for decades!) of using high school…. my lunch is here 🙂 more later!

Categories: publicity Tags: ,

more on gender and genetic counseling

continuing the discourse on the idea of “male-ness” in genetic counseling, i find myself shocked, surprised, i don’t know. i’m not sure. read this, from Rayna Rapp in Testing Women, Testing the Fetus, 1999:

Men are scarce in the world of genetic counseling: About 5 percent of the graduates of genetic counseling programs are men, and many of those are employed in administration. As the female director of counseling services in one program put it, “men just use genetic counseling to jump into administration. If a man got hired here, he’d want my job.” Several seasoned counselors expressed great ambivalence about the capacities and limits of men in the profession. “Men aren’t sensitive to counseling issues, to the anxiety of pregnancy,” one said. “science, that’s just information; the skilled part of this job is in the female psyche. Oh, it might work here at Middle Hospital , they’re [hospital staff] well organized. But imagine him at City, where we work in an examining room, and women run around half-dressed. What would we do with a man?” Despite their consciousness of male-dominating biases affecting their own professional standing and pay, counselors are hardly immune to gender stereotypes. But the questions this counselor is raising – whether men are by nature or training less empathic than women, whether identification with similar bodies is necessary to provide the best pregnancy counseling; in other words, “Why can’t a man be more like a woman” – reverberate inside all counseling skills.

finally a frank discussion of what’s usually (in 2009) spoken in-between the lines of “I don’t know any males that are currently counseling; the ones I do know are no longer doing clinical work”, or “Most male genetic counselors tend to work in Cancer Genetics.”

why is it that there’s an opinion that men are not well suited for counseling, and on top of that, reproductive genetic counseling? why is it that these stereotypes stand, possible even today, 10 years later, so readily expressed in supposedly objective situations as what a man would do in an examining room with women half-dressed. is that not what obstetricians, gynecologists, breast oncologists and surgeons do, where the opposing criticism in those fields that were once dominated by white, affluent, males, not necessarily about appropriateness of their presence but rather gender equality?

i can see the criticism, and understandably, perhaps historically the roles of males in the field of genetic counseling are accurately reflected in such statements. however, who is it to say that it’s the male’s intentions, lack of empathic skills, and general unsuitedness to reproductive genetic counseling that pushes him to administration? is it not the influence of the higher hospital administration that allows him to be there, allows him to be chosen, and if offered, the influence of social & financial factors that would incline anyone (male or female) to refuse a promotion? are these statements not the singular opinions of one person (let’s even ignore gender here), who has both an interest in preservation of professional status and role, and perhaps an established bias (that extends to stereotype) against a particular and potential rival group to her/his position?

there are obviously many factors that influence the counselor-client relationship, and even more influences that may exacerbate miscommunication or mis-foster the counseling environment. but to pin a certain gender as universally less capable… i am unfortunately not trained to appropriately evaluate.

Rayna Rapp (so glad i picked up her work) continues:

But the vast literature on communication between counselors and clients suggests profound chasms separating their various agendas and accomplishments that are not dependent on the sex of the service provider.

sure, i’m making assumptions based on a single quotation, of an anonymous source, indirectly through the lens of the author. but it exists! it’s been spoken! it’s been published! i can’t help but wonder what my future supervisors,, colleagues, and those who interview me will think when i express my interest in reproductive genetics. will i receive the same questions, the same assumptions, the same stereotypes as those that may or may not have been pinned when i chose to apply to genetic counseling programs? i wonder.

certainly this is why research exploring the cultural and familial contexts of reproductive genetic counseling is of utmost importance. (shameless plug and ego-boost for my personal research interests…)

respect to the MoD

i’ve always really respected the work that March of Dimes does and look up to their organization – both in terms of what they provide patients and providers in terms of information and resources, but also the position they hold in promoting ethically conscious decision making to prospective, expecting or new parents. just a few weeks ago, during a branch meeting, i showed a short, 5-min video by MoD that’s meant to introduce parents to newborn screening for a materials evaluation. needless to say, everyone had great things to say about the video and the many different places in which this simple video could be used effectively.

however, what’s more exciting is recent news of the MOD warning consumers about the risks of DTC Genetic testing and they’ve recently put up a new page on their website:  At-Home Genetic Tests: What You Should Know. absolutely a breath of fresh air coming from those wonderful people over in New York:

When it comes to your health and your baby’s health, your health care provider is the best person to help you decide what genetic test, if any, is right for you and your baby.

not to be rude or anything, but damn right! honestly, i am so pleased to finally see such a large and respected organization put the facts out there, in as simple a way as possible, in a manner that is beneficial for consumers/parents/patients, non-genetics professionals, and even genetics professionals who may be less familiar with the DTC trends going on currently.

a news desk article on their website continues:

Women are particularly vulnerable during pregnancy to sales pitches that play on a new mom’s fear and guilt.  Companies that offer the tests say they can predict a baby’s future height or athletic ability, or can assess the future risk of cancer, diabetes, Parkinson disease, or obesity.  The March of Dimes believes consumers should be very cautious before spending the money — and risking their privacy — on such tests.

once again, just making the same warning everyone else has been, but it’s nice hearing it from march of dimes. oooh i really do heart them. and their nifty booklets/paphlets/cheat-sheets they put out for providers that have all newborn or carrier screening info you’d ever want.

read more about it:

http://news.prnewswire.com/ViewContent.aspx?ACCT=109&STORY=/www/story/07-08-2009/0005056605&EDATE=

via

http://www.genomeweb.com/blog/blasting-dtc-genetic-dx-shops-march-dimes-statement-may-drive-more-people-use-cl

another Sequenom update

more trouble seems to be brewing. bubbling. well, more like simmering… in the Sequenom part of the DTC world.

a reported 80% drop in the Sequenom stock over the past half year, sucks for them, most of which happened back in April i’m assuming. such an unfortunate loss of momentum, and the most recent inquiries into Sequenom…

Sequenom disclosed in a filing with the US Securities and Exchange Commission Tuesday that the SEC is investigating the firm over its announcement in late April regarding the mishandling of R&D test data and results for its SEQureDx Down syndrome test.

they say this is to be expected. i, on the other hand, know little abotu the SEC. but as i guess is appropriate, this reflected another drop in shares. starting the 2nd half of 2009 with the same bang as the first half eh?

they state their willingness to cooperate… of course you’re going to cooperate. what if you didn’t? well, where would your credibility be?

The filing does not detail the SEC’s concerns, but Sequenom said that it intends to “cooperate fully with the SEC in this matter.” It added, “Our internal investigation is ongoing.”

so no news of what’s happening to SequreDX. ongoing internal invetigations. i’d hope they’re trying to figure things out given this and their recent shareholder class-action lawsuits..

come on Sequenom, your noninvasive prenatal diagnostics train had been running so smoothly until 2009 came around. regardless of how accurate or what ethical issues these “diagnostic” tests raised, it was still promising technology that would surely promote refinements and public discussion…

read about it at the following and above links:

http://www.genomeweb.com/dxpgx/sec-investigating-sequenom-over-down-syndrome-test

UPDATE:

so it sounds like while SequreDX is being put on hold, their CF, XY and Rh tests will start being released over the next few months. let’s see if that boosts your self-esteem a bit..

http://www.mlive.com/business/west-michigan/index.ssf/2009/07/sequenom_still_plans_expansion.html

heard through:

http://finance.google.com/group/google.finance.664159/browse_thread/thread/f7382fe18ddc2224

also, sounds like their Grand Rapids, MI labs will be expanding..  and they’ll be submitting (?) some prelim trial results to a peer-reviewed journal. hmm… what’s this all mean.. other than a 10% stock increase just today?

http://finance.google.com/group/google.finance.664159/browse_thread/thread/c05e16c0fab7dfea/de094a19c23de748#de094a19c23de748

hmm.. now, what I want to know is who is this jjuless person that been spamming google finance’s SQNM page with all this “good” sequenom news…

23andMe not-a-BLIMP! (apparently it’s a Zeppelin)

23andMe Blimp! Just look at it!

23andMe Not-a-Blimp! Just look at it! (not my pic)

So on my way to work today, driving across from 880 to Westbound 80, avoiding the Bay Bridge toll plaza, I saw a pair of chromosomes from my onramp in oakland that I knew immediately belonged to the 23andMe logo. Nevertheless, these were on a not-a-blimp! I tried to take a snapshot on my phone, but sadly, resolution wasn’t so great and  the not-a-blimp was out of my driving trajectory, but a quick search online and lo and behold, there definitely is a 23andMe not-a-blimp!

Talk about aggressive marketing! This is taking the DTC part of personal genomics waaayyyy beyond what I had expected. Sure, trendy spit parties at fashion week that make the Times is one thing, but a not-a-blimp to harass SF commuters? C’mon. Personal genomics is not something that can be sold as a simple commodity. The procedures, risks, and implications of it can be serious, and by advertising the service as though it was a movie or typical commercial product is tricking those that are less genetically literate (unfamiliar in complex genetics) into thinking that this is just  for fun.

According to Alex Hall, CEO of Airship Ventures, via ChubbyBrain

While blimps can also do advertising, the Zeppelin is 50ft larger than any of them and can provide unique promotional opportunities…

I can only speculate how much this costs in advertising. Sure, the previous contract was with Disney-Pixar promoting UP, very appropriate, especially in the Bay Area. But personal genomics?

http://www.airshipventures.com/tours-promos.php

Airship Ventures even has a time-lapse Youtube video they just posted of the application of the 23andMe logo that was uploaded yesterday.

http://www.youtube.com/watch?v=mho_x9Z1Na8

UPDATE:

After a bit more digging, and not to be offensive, there’s something strangely incestuous about the relationship between Google, 23andMe (which you already knew), and this Airship Ventures company. A relationship that involves founders, mothers, board members (i.e. 23andMe cofounder’ s mother, back in october of last year, writes a travelogue promoting Airship Ventures (links below). Airship Ventures’ major investor is 23andMe’s first listed board member, which for once, isn’t all that surprising… So that’s where this is coming from..

http://www.huffingtonpost.com/esther-wojcicki/the-return-of-the-zeppeli_b_138961.html

via:

http://valleywag.gawker.com/5071678/google-founders-journalist-mother+in+law-writes-blimp-infomercial

Update:

Apparently the difference between a Zeppelin and a Blimp is whether or not there is a rigid, internal structure. The former, which is the case mentioned here, is rigid, wherease a blimp is, well.. floppy ( that word’s for you, Beth).

YETANOTHERUPDATE:

you can track the zeppelin!!! in case you actively wanted to be visually spammed by the zeppelin….

http://www.airshipventures.com/tracking.php

via 23andme’s facebook page: which is.. having a contest for best picture of the zeppelin to get fifty-buck discounts? really, whatchu gonna do 23andme when its some 15 year old kid that wins the contest? oh yeah, they don’t have restrictions on age, despite established NSGC positions about childhood testing

Prenatal and childhood testing for adult-onset genetic conditions should always include genetic education and counseling. Genetic counseling for clients considering such testing should include exploration of the psychological/social risks and benefits of early genetic identification from both the parents’ and child’s perspectives. When possible the child should be involved in the decision about whether or not to be tested. Other issues discussed should include the possibility of discrimination in insurance, education and employment for the child or family in both the immediate and more distant future.

Categories: publicity, Uncategorized Tags: , ,

a sad day for the frugal student traveller

i just received the following email from Southwest Airlines that tugs at my financial pursestrings, infuriates the i-want-the-best-deal aspect of my existence, and is deprivilegizing my travel choices:

As an active participant in the College Rapid Rewards program, we wanted to make you aware of some changes effective July 15, 2009.

The College Rapid Rewards program will be discontinued, and new enrollments will not be processed. However, as a current Member, you will continue to earn bonus credit through October 15, 2009.

Beginning October 16, 2009, all former College Rapid Rewards Members will earn Rapid Rewards credit at a standard rate, consistent with the general program.

Despite this change, there are still lots of ways to earn credit as a Rapid Rewards Member, both in the air and on the ground! Just visit RapidRewards101.com for information about Rapid Rewards Preferred Partners and ways to get to an Award faster than ever.

We apologize for any inconvenience and look forward to seeing you onboard soon!

Your Friends at Rapid Rewards

no more are the days where, because of interviews, i can rack up a free round trip in a matter of months! no more are the days where i feel like just cause i’m young and have to fly home for breaks, am i getting treats (like free drink tickets and the occassional free flight). no more are the days when..
oh. now i’ll just be like everyone else and earn my free flights more slowly. i’m almost out of the age range anyway, so perhaps this is a timely notice.

forget i started ranting 😉

(btw, a recommendation to people going on GC or job interviews.. DEFINITELY sign up for flight rewards programs before you make your trips – so you can start building up your miles! in my 6 years of school away from home, i’ve already received three round-trip rewards flights!)