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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!)

as the Sequenom wheel turns.. o

so subscribing to GenomeWeb Daily News on my fancy shmancy Google Reader is awesome because I get to hear all the updates right away! on that note, things about Sequenom always seem to catch my eye. today, apparently…

Shares of Sequenom soared in Tuesday trade, even though there appeared to be no news that would create such a surge in both its price and trading volume. Sequenom finished Tuesday up 58 percent at $5.30 on the Nasdaq. More than 53 million shares traded hands on the day — nearly 10 times its average daily trading volume.

makes you wonder, what’s going on dudes?

http://www.genomeweb.com/dxpgx/sequenom-shares-rise-sharply

Categories: publicity Tags: ,

Dr. Tiller and his critics

the news of Dr. George Tiller’s murder is absolutely chilling. all the commentary out there, while completely respectful, still sends shivers down my spine and I have trouble acknowledging the extremes that some individuals go to in trying to make a point. it is reassuring to hear the very vocal condemnations of this event. although, statements like the following perhaps shouldn’t be quite so defensive in a time where individuals may need the space to absorb the facts:

Kansas Coalition for Life

The Kansas Coalition for Life Unequivocally Condemns the Shooting of Abortionist George Tiller.

Although at the time of this writing, it is not known who killed Abortionist Tiller, we do know for certain that this crime was NOT the work of any true proLife person. A true proLife person respects human life as a gift from God, and leaves all life and death decisions to God Himself.

This killing — if it is in any way connected to a genuine proLife group, has the potential to set back the proLife movement by 20 years or more.

The Kansas Coalition for Life asks all reporters and commentators to make a clear distinction between lawless thugs who act on their own accord, and the good proLife people who obey the law, seeking a change in abortion laws via peaceful means and the legislative process.

It is completely misleading, for the media to imply, in any way that this is the work of the proLife movement. We urge the media to report responsibly and truthfully in this regard.

KCFL would have much preferred that Abortionist Tiller follow the footsteps of Dr. Bernard Nathanson, a former abortionist who is now one of America’s most prominent and effective proLife leaders.

In 1993 Shelly Shannon, who had no connection whatsoever to any proLife organization, brought shame on all proLife groups by her stupid action, when she attempted to kill abortionist Tiller as he entered his abortion facility on East Kellogg Drive at Bleckley Street in Wichita.

Tiller’s death comes at a time when all recent polling data shows that the peaceful proLife message has the support of a majority of American voters. We hope this terrible news does not hurt the steady progress that the proLife movement has made by peaceful legal means over the years.

source: http://www.kansas.com/news/local/story/834437.html

Categories: people, publicity Tags: ,

the NEW NSGC blog…

our profession is so cool. our national, professional organization/society’s president now has a blog. i’m interested to see the direction this blog takes, as there has not really been an open forum between the NSGC and the internet community as a whole. sure the listserv is the staple of the genetic counselor’s repetoire and an incredible resource for members, but it is a bit cryptic to find out professional information about the field of genetic counseling by navigating the scary NSGC website.

Steven Keiles has posted the strategic plan that NSGC is looking to promote. take a look at it if you’re interested in what the most pressing concerns in the field of genetic counseling are overall (issues with payors/reimbursement, integrating GC into comprehensive care, etc.)

check it out:

http://nsgcpresident.blogspot.com/

Categories: publicity Tags: , ,