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Posts Tagged ‘DTC’

23andMe’s National DNA Day Garage Sale

Yesterday was National DNA Day. In addition, 23andMe decided to hold a massive sale on their “complete” scan for $99.

That in and of itself is not so exciting to me. What is, however, is the ensuing commentary that I found on SlickDeals. It is rare you see such a massive discussion with hundreds of contributors from the general public commenting about the risks/benefits/limitations of 23andMe in such a public forum.

Of course there’s the general trolling “I got my results back last week, I’m half German shepherd! Thanks, 23andme!”, and the people who are just excited by the price “OMG! This is a really hot hot deal!”.

But then you get some deep discussion about the value of the information, such as this snippet from poster travfar:

“The poster’s comment was that a false positive/negative would make someone worry about something needlessly for the rest of their lives. Telling people that smoking will give them lung cancer is the same thing. The message that goes out is that if you smoke, you’ll get lung cancer. But the reality is that if you smoke, there’s an 80% chance you won’t get lung cancer. Life causes lung cancer. It happens to nonsmokers as well.”

Go take a look, mine through the pages. This would contribute amazingly to someone interested in looking at public perceptions of DTC, in a format that is free from study bias.

via SlickDeals: http://slickdeals.net/permadeal/33332/complete-edition-dna-testing-kit

UPDATE:

Gizmodo has some interesting commentary too!

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a case for incremental risk communication in SNP-based, common-chronic disease risk

oi, life has been busy indeed. as i delay my packing for the American College of Medical Genetics meeting in Albuquerque yet another hour past midnight, here is something i have been working on that has been particularly interesting to me: risk communication in public health. as of my public health courses, i of course bring in my knowledge and interests around genetic testing and emerging genetic technologies into play. here is a sample of a short piece i wrote discussing the idea of emphasizing incremental risk…

Incremental Risk Communication and Common Genetic Variant Risks

The framing of numerical risk comparisons as incremental values when compared to showing risk figures as simply a comparison of absolutes risks has been show to better focus the target audience’s attention on specifically the change from baseline risk (Zikmund-Fisher B, Fagerlin A, Roberts A, Derry H, et al 2008). In the context of genetic risk communication and genetic counseling for many highly-penetrant and/or mendelian-inherited disorders, the risk of developing symptoms and risk of inheritance, respectively, garner considerably less utility in highlighting incremental risks given the often extreme differences that exist in these risks when compared to the general population. In stark contrast are those risks conferred to individuals when common genetic variants, such as those ascertained through many recent genome-wide association studies imparting minimal to modest risks, many with a relative risk under 2 (Eng C and Sharp R,  2010). Among a slew of complex ethical, legal, and social issues surrounding the reliability and clinical utility of communicating these common variant risk modifications to the public, an underlying methodological issue has been how a genetic counselor can actually communicate such small relative risk figures without misrepresenting the actual changes in baseline risks and increase in risk due to a variant. A potential solution lies in the communication of incremental risks in the methods that the authors of Zikmund-Fisher et al. 2008 demonstrate, focusing on comparison of baseline, absolute risks and the incremental changes attributed to presence of a common genetic variant.

In order to properly frame the utility of incremental risk in this scenario,  a hypothetical discussion of an individual with a baseline heart disease risk of 14%, and a testable, validated common genetic variant will exist, with an relative risk of 1.3 affecting heart disease in individuals of this population, will be presented. One technique normally found in the genetic counselor’s repertoire in risk communication has been to state baseline risks, and then to provide the odds ratio of possessing the common variant in multiple formats. These multiple relative risk formats could be framed as “1.3 times greater chance of heart disease”, shown that the variant provides “30% more risk”, or provided as the absolute risk of an individual with the common variant to be 18.2% for heart disease. None of these techniques, however, highlight the “marginal increment in risk while simultaneously providing information about baseline risk level for context” (Zikmund-Fisher et al. 2008).  Instead, framing the change in risk of an individual that possesses our proposed common variant through incremental risk, may highlight the change in risk more accurately without the need for more high numeracy-requiring processes of mental math: multiplying relative risks against baseline or subtracting absolute final risks from baseline.

In this scenario of highlighting incremental risk, the communicated risks would thus be provided as a baseline, absolute risk for heart disease of 14%, while individuals possessing the common variant experience an incremental absolute increase of 4.2% risk for heart disease, providing a total of 18.2% absolute risk. While the authors of Zikmund-Fisher et al. 2008 acknowledge that providing incremental risk altered the degree of worry in participants, without knowing what the appropriate degree of worry should be among these individuals, the focus on the specific change in absolute risk more accurately distinguishes for audiences the most important element of the risk communication.

Cited:

Eng C, Sharp RR. Bioethical and Clinical Dilemmas of Direct-to-Consumer Personal Genomic Testing: The Problem of Misattributed Equivalence. Sci Transl. Med. 2010: 2, 17cm5 .

Zikmund-Fisher BJ, Fagerlin A, Roberts TR, Derry HA, Ubel PA. Alternate methods of framing information about medication side effects: Incremental risk versus total risk of occurrence. Journal of Health Communication 2008;13(2):107-24.

Larry David’s “true ancestrial roots”

November 16, 2009 Leave a comment

here’s a funny video of Larry David’s experience with ancestry testing through the Ancestry by DNA test from DNA Diagnostics Center, as revealed on George Lopez. apparently their test uses 176 Ancestry Informative Markers, or AIMs. which ones these are and why they only test for European, Native American, Sub-Saharan African, and East Asian “BioGeographic Ancestry”, we don’t know without inquiring further. the references they cite are all from 2003 and before too..

Larry David is 63% European, 37% Native American.

“so I fail as a European?”

ain’t that interesting. it does make it seem a bit ridiculous/sensational, but funny indeed. their explanations of how these things work, however, aren’t the clearest thing:

ancestrybydna

methodology? heh.

from: TBS Lopez Tonight via genomeweb The Daily Scan

also check out: DNA and Race FAQ via AncestrybyDNA

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.

following 23andme on twitter is depressing..

as a future clinician, tweets like this creep me out:

by @taohansen:
My 23andMe results are in: the worst thing I have to worry about is my 61% chance of Venuos Thromboembolism.

so is that.. a risk for superficial venous thromoboembolism? or risk for a deep venous thromboembolism (DVT)? or even a pulmonary embolism (PE)? of which the latter two are, i’d say, pretty serious…

its especially weird especially when the response by @23andme is:

@taohansen Did you find anything else of interest in addition to the Venous Thromoembolism in your #23andme results?

meh. who am i to judge… lowly genetic counseling student.

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

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.

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