Knowledge is power. But a little knowledge can be a dangerous thing. I'm trying to reconcile these two ideas to decide whether learning my personal genetic code would do more good than harm.

I read today about Google founder Sergei Brin's discovery that he carries a genetic mutation that greatly increases his chances of developing Parkinson's Disease. Brin's wife, Anne Wojcicki, is the co-founder of a company, 23andMe, which offers personal genetic testing. For just $399 (which makes it well within reach for many people), the company will analyze a saliva sample to provide an in-depth report on how your genetics influence more than 80 diseases, health-related conditions and traits. You can learn what is encoded on your DNA and what it might mean for your current and future health.

Do you want to know whether you are predisposed to have a heart attack or develop breast, colorectal, lung or prostate cancer? Are you destined to be bald? Have gallstones? Or live a long life? Would you live your life differently if you knew you did not have the heart attack gene? Maybe not be as motivated to exercise? Or if you were a smoker with the lung cancer gene, perhaps you would be more motivated to quit smoking?

When we move away from the population-based risk generalities and to our own very specific DNA, I am not sure which way the psychology will lead most people. On the one hand, knowing which diseases are more likely to develop than others lets you focus on the health-related behavior changes that may get you the most bang for the buck. If you have the genes for venous thromboembolism, you can take precautions on long airplane rides and be more aware of symptoms that need prompt medical attention. Those with several of the nine genes related to Type 2 Diabetes can focus on losing weight and monitoring changes in their blood sugar over time.

Along these lines, a recent study showed that patients with high cholesterol are more likely to be motivated to stay on their medication after seeing an actual scan of their own arteries showing blockage from plaque -- kind of like the medical version of Scared Straight. The only way to get more personally relevant than seeing evidence in your own body of your risk for heart disease is to see what your genes have to say.

On the other hand, the information people receive (and possibly misinterpret) about their genetic inheritance could lead to an unhealthy fatalism that prevents them from taking any action. If it's written in their DNA, what can they do to stop it? Or the absence of a disease-related gene, such as for breast cancer (they test for 2 genes, but not the rare but high-risk mutations in the BRCA1 or BRCA2 genes), may lead to an unwarranted sense of invulnerability and the belief that mammograms are no longer necessary.

Of course, biology is not destiny. But it might be hard not to take it as such if you learn that you are at high risk for developing a potentially fatal disease. You may live your whole life in dread, waiting for the other shoe to drop (that is a strange phrase, isn't it?).

I am reminded of something that happened to me, which illustrates the idea that a little knowledge can be a dangerous thing. Quite a few years ago, I was having back pain and so my doctor had an X-ray done of my back, along with an MRI. In addition to discovering that three of my vertebrae were fused in what was apparently a congenital condition, the MRI showed what the radiologist termed a "syrinx-like cavity" in my spinal cord. So of course I went online, looked up syrinxes and found that they can be a result of a degenerative disease called syringomyelia. It appeared that I would eventually suffer from things like motor impairment, muscle weakness, loss of sensitivity, and chronic pain. I and my family were devastated.

I became an expert on the disease, identified the best course of treatment (surgical implantation of a shunt in the spinal cord) and found clinical trials I could sign up for. Because this is a fairly rare disease, my regular physician and the specialists I consulted with did not have much more to tell me than what I could find myself. The fact that I was asymptomatic was a good thing, but symptoms can come suddenly, triggered by coughing or straining that puts pressure on the cerebrospinal fluid.

I was lucky that one of the world's experts on syringomyelia was based at UCLA, and after what seemed like a very long time, I was able to get a consultation with him. He took one look at my MRI and said that I did not have syringomyelia. The syrinx was just a vestige of a congenital blip in the development of my spinal cord, and would likely never cause me any problem. And just like that, the random discovery of this anomaly that had turned my life upside down no longer meant anything. False positives are always an issue, as they are with technologies like full-body CT scans that are fishing expeditions for evidence of disease.

As more and more people decide to delve into their genetic endowment, like those at the "spit parties" hosted by 23andMe, ethical issues are bound to pop up. I don't think we'll ever have Gattaca-like genetic discrimination, but what happens if insurance companies decide they need to have a look-see at our DNA before they agree to cover us? Genetic testing already plays a prominent role early on in the dating process in some Orthodox Jewish communities, with both parties getting tested and checked against each other to see if they are genetically compatible (i.e., not both carriers of genes for genetic diseases more common among Ashkenazic Jews). Potential couples who may otherwise be perfect for each other may never get together because of that 25% chance of having a baby with a disease like Tay-Sachs or Cystic Fibrosis.

So, what do you think? Do you plan to have yourself and your family tested? Would knowing your genetic code motivate you to take action? Or are there just some things you would be better off not knowing?


Photo Credit: MASH DnArt

Technorati Tags: 23andMe, Sergei Brin, Google, health, genetics

Please join me today (September 16th, 9 am - 7 pm EDT) in a CDC-sponsored Web Dialogue on New Media in Health Marketing. I will be a panelist, along with:

• Ann Aikin, Health Communications, CDC/NCHM/DeHM
• Jennie Anderson, MS, AIDS.gov and John Snow Inc.
• Miguel Gomez, Director, AIDS.gov, OS
• Fard Johnmar, M.A., Envision Solutions, LLC
• R. Craig Lefebvre, PhD, Adjunct Professor, School of Public Health and Health Services, George Washington University

We'll be asking questions, offering ideas and answers in response to your questions and thoughts, and discussing issues related to blogs, social networks, and other types of social media, as they relate to health marketing (CDC's term for social marketing). Over 300 of our closest friends have also registered, and will be part of the conversation as well. I hope you will register and join us!

P.S. I will be joining late, as the three hour time difference, plus dropping my sister off at the airport, will delay my jumping in. I'm counting on you all to keep the conversation going until I get back!

As promised, here is the guest post from CK following up on the proceedings from the ServiceNation Summit:

Having just come off of ServiceNation's Summit I'm aflutter with thoughts. It's not every day that I attend an event with 500+ leaders of non-profit, NGO and social change organizations. And it's certainly not every day that I get to be at an event with such notables as Barack Obama, John McCain, Hillary Clinton, Jon Bon Jovi, Usher, the CEOs of AARP, Habitat for Humanity and the list goes on. And on.

The event left me humbled and heartened; I guess the best way to put it is that the event left me affected. And I admit to wiping tears from my eyes when Hillary Clinton hit the stage. Whether you voted for her or not, she has done momentous, moving things in her career. Matter of fact, whether you agree with the views or parties of any of the political leaders that were present, I hope we can all agree that these people have accomplished much (as anything else would be downright myopic).

And I give compliments to BOTH presidential candidates for doing well at Thursday night's Presidential Summit. I didn't come at this event to judge, but to listen. You see, this event was not a debate because this event was about uniting us all around something on which we all agree: the need to place service, in its many and myriad forms...spanning improvements to education to bettering our nation's health to eradicating our plummeting levels of poverty...into a place of more prominence in our country, to garner more participation from the public and the need to shift many of our existing perceptions around service.

And if we're talking prominence and participation---and most definitely when we're talking perceptions--we are talking my language. Um, marketing anyone?

#1 Exalt prominence: As a nation we have plenty to be proud of on service--many don't realize what a strong nation of volunteers and efforts to improve social conditions we can boast. But we haven't placed this as prominently as other departments. Governor Schwarzenegger and wife Maria Shriver have worked hard to get California to appoint a Service Director to its cabinet level--and both McCain and Obama vowed to add this position to their cabinets at the federal levels as well. There are bills dedicated to service that are currently in Congress and ServiceNation unleashed a Declaration of Service that many signed at the event.

#2 Increase participation levels: Whether through activism, advocacy or volunteerism, our nation can increase its level of time dedicated to service. Corporations can make it easier for workers to dedicate a portion of their time to charities. Individuals can learn how to spend a few less hours watching TV and instead teach a child or an adult to read. As marketers we can lend a few spare hours a month to helping a charity with their promotional needs. Point is, we can get creative, and dedicating time to service can be both impactful and tenable amid busy schedules.

#3 Shift pre-existing Perceptions: Obama hit on how we "need to make service cool again" and Schwarzenegger hit on how we need to "leave a space open on our resumes for service," while Bon Jovi wants to make "service the new black, always in high fashion." The thing is, we need to shift perceptions around (1) how much service improves our country and its citizens and (2) whom all can dedicate time to service. Remember, while the young have unparalleled levels of energy, older segments have unprecedented wisdom that can only be gained through experience--with retirees having more time they can allot to important causes (I will talk more on this later as, just like AARP underscored, we need to stop viewing the 50+ segment as a deficit when, in fact, they will likely be our biggest asset).

In closing, I would be remiss if I did not extend my gratitude to three entities:

First, to ServiceNation: The event itself--and the overall movement--is a marketing brainchild. BRAVO! There are many organizations dedicated to improving the country's many issues and pushing for social change so to nestle them all under "service" was clever. What's more? ServiceNation is only about 18 month's old, which makes their tireless efforts all the more impressive.

Second, to Echo Ditto: I am beyond impressed at how professional and respectful the EchoDigital Team were to we bloggers (big props to Brian Reich and Joseph Porcelli). They ensured we were well communicated to and had proper accommodations. So much so that, as a professional, I would have no reservations about recommending them to my clients who need help in bolstering communications and communities around their special events.

Third, to Nedra Kline Weinreich: Nedra is both teacher and friend to me. She not only provided me the reference to attend the event, Nedra helps me every day. She's taken the time to teach me new strategies and methods on social marketing (which is NOT the same thing as social media--read more here). I find that teaching another is one of the most giving things we can do for another person; in this case it's a huge act of service in bettering our profession.

PS: Yes, those are pictures from speakers at the event. I needed to take shots of the large screens as I wasn't close enough to the stage to get clearer pictures (and Schwarzenegger attended via video feed). I hope it's OK that I placed photos of the big names in this post...as I said in my opening, it's just not every day that I'm in the company of 500 of them.

---

Nedra here again. A big thanks to CK for her reportage and analysis, as well as the very kind things she said about me. If you would like to read other bloggers' takes on the summit, here are some links:

Be the Change, Inc.

The New Service

Have Fun * Do Good

Allison Fine

The Toad Stool

Awearness: The Kenneth Cole Blog

Everyday Giving

Columbia Graduate School of Journalism

Spark*Blog

Future Leaders in Philanthropy (FLiP)

Social Citizens

Conservation Nation

Inside the Marketer's Studio

My 2 Cents

In this political season, it's easy to get caught up in the partisan politics and back-and-forth snipes. But on September 11th, both candidates will come together on something they can agree on - the importance of community service. Without enthusiastic and willing volunteers, many nonprofits would be unable to function. An organizing committee of 118 member nonprofits, from AARP to Youth Volunteer Corps of America, has put together a monster pep rally to kick off a new national initiative called ServiceNation.

I was invited to attend their New York-based event as a blogger, but unfortunately there's no subway stop near me here in LA. So I am sending blogger friend and New York local CK (Christina Kerley) to go in my stead to report back to us on the event. If you don't already know CK, she is one of the most generous, clever and authentic voices in the marketing blog community; though she does not primarily work with nonprofit issues, per se, she certainly has the heart of a social marketer.

Here is CK's preview of the event, which is also cross-posted on her blog:

I'm both honored and over the moon to be attending ServiceNation's Summit on September 11th and September 12th. I'll be blogging a wrap-up of the event...and oh what an event it will be.

For two days over 500 leaders will convene in NYC for a moratorium on politics, to wholly focus on service. The lineup of speakers is mind-blowing (and make me feel oh so small) including Barack Obama, John McCain, Hillary Clinton, Ted Kennedy, Arnold Schwarzenegger, Michael Bloomberg, even Alicia Keys, Jon Bon Jovi, Kenneth Cole, Usher and the CEO of Habitat for Humanity (my FAVE nonprofit organization).

See why I'm over the moon?

I'll be posting after the event, and I'll twitter when I can, but I wanted to first give you some background:

"ServiceNation Summit , Sept. 11-12 in New York city, will bring together 500 leaders of all ages and from every sector of American life —from universities and foundations, to business and politics—to celebrate the power and potential of citizen service, and lay out a bold policy blueprint for addressing America’s greatest social challenges through expanded opportunities for volunteer and national service.

The Summit will begin with a presidential candidates' forum the evening of September 11, where Senators McCain and Obama will speak in depth about their views on the role of citizenship and service in post-9/11 America. New York Mayor Michael Bloomberg will welcome the attendees when the proceedings continue the following day, and the summit will conclude with a keynote address by California Governor Arnold Schwarzenegger, who earlier this year became the first governor to create a cabinet post dedicated to service and volunteering."

ServiceNation is a campaign for a new America. An America where citizens unite and take responsibility for the nation’s future. An America that restores the great tradition of citizen service, and honors the profound sacrifices made by so many Americans who have passed before, from the small band of Founders to the millions who have fought for equality and justice at home, and defended our freedom abroad. ServiceNation is about an America that is ruggedly idealistic, compassionate, and above all committed to the idea of shared sacrifice in pursuit of America’s boldest promise: liberty and justice for all."

I will be joined by my fellow colleagues'/marketing bloggers: David Berkowitz, David Reich and Alan Wolk...so watch for posts and tweets from us all. Lastly, I need to give a HUGE shout-out and HEAPS of gratitude to Nedra Kline Weinreich for recommending me to attend this event. Unfortunately, since she's on the West Coast she won't be able to attend (and will have to vicariously experience the event through me); but she has truly made my year. I'll be cross-posting on this blog and her blog about the event.

Here are some links for more info.:
To see the schedule of events on Thursday and Friday go here
To follow ServiceNation on Twitter go here
Follow David Berkowitz, Alan Wolk or CK (me) on Twitter
To learn more about ServiceNation go here

Kudos to the ServiceNation organizers for reaching out to bloggers to extend the reach of their event. In addition to CK's coverage here after the event, I will also link out to other bloggers who are attending, including Allison Fine, Anthony Showalter and Lara Galinsky of Echoing Green, and others I know who are awaiting their security clearance.

I'm looking forward to CK's report about the Summit, which will appear here soon afterward. In the meantime, check out some of CK's posts related to social marketing issues and social media. Thanks, CK, for being our intrepid reporter!

While at this point it is apparent that Hurricane Gustav is not going to turn into another Katrina, at the end of last week it was not so clear. What was clear is that social media is playing a bigger role in disaster preparedness and response than ever before.

As we went into the holiday weekend, I watched in awe from the sidelines as a tribe of people on Twitter mobilized to put social media tools into place to deal with the anticipated disaster, building on what had been created two years earlier on an ad hoc basis in the social aftermath of Katrina. With a volunteer effort led by Andy Carvin of NPR, the work centered around a Ning social network called the Gustav Information Center and a related wiki.

In this and other independent initiatives, many people created and compiled tools like Twitter feeds that broadcast government alerts, news, and blog links about Gustav, as well as a widget that combined all Twitter mentions of Gustav; an interactive map that shows evacuation routes, shelter locations and storm movement; a feed of Craigslist volunteering and housing opportunities; a mobile resource guide and more. ReadWriteWeb compiled a comprehensive list of the online resources that were created mostly in advance of the hurricane's landfall.

While clearly the government was much better prepared to ensure there was no repeat of the chaos that ensued after the dropping of balls at multiple levels two years ago, and nonprofits like the Red Cross stood at the ready to assist people displaced by the storm, the prize for coordination has to go to the citizen volunteers who spent their Labor Day weekend building a massive online infrastructure. These are people who often had no connection to New Orleans other than a strong desire to do something to help their fellow humans. And by working together in a coordinated way, they were able to avoid duplicating efforts and use their volunteer time most efficiently.

Considering the massive resources that FEMA has at its disposal, the web page it created with information about the Federal response to Gustav is fairly paltry. The Red Cross utilized a blog as an online newsroom to good effect, with multimedia resources for the press and quick distribution of downloadable public service announcements. And its Safe and Well list can also be accessed via Twitter.

But it is the combined contributions of hundreds of social media enthusiasts that created a gale force of its own and demonstrated the raw power of the social web.


Technorati Tags: hurricane gustav, social media, disaster preparedness, fema, red cross