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
I just learned from Dick Morris that political and social media pioneer Tony Schwartz died this weekend. While he is perhaps best known for a TV commercial that ran only once but changed the course of an election (the Daisy ad) and his media work for other political candidates, he is also owed a debt of gratitude for his influence on social marketing as well.
Among the more than 20,000 spots Tony recorded in his lifetime were the first anti-smoking commercials. A 1961 ad featuring children dressing up in their parents’ clothing in front of a mirror (“Children learn by imitating their parents. Do you smoke cigarettes?”) was credited by the American Cancer Society with driving the tobacco industry’s ads off television and radio. He was an active anti-tobacco advocate and addressed many social issues as well.
I was lucky to have met Tony several times as a student at the Harvard School of Public Health. He co-taught a course on developing media communications that I took, and for which I later became the teaching assistant. Because he was agoraphobic, Tony did not often leave his home in New York City. He taught the class via teleconference, and we actually flew up to New York to meet with him a couple of times in his 56th Street apartment/studio (yes, it’s nice to go to a school with resources like that!).
In his cramped studio surrounded by massive shelves of tapes and videos, we had the opportunity to learn from the master. At the end of the quarter we had our own PSA radio spots recorded by a professional announcer there.
From Tony, I learned the importance of tapping into emotions, using sound and images to strike a “responsive chord” with what people already knew and believed. And long before the Truth campaign came along, he was wielding the delicate scalpel (and sometimes blunt club) of shame to get people to do the right thing about everything from picking up after their dog to city budgetary issues.
His guerrilla media approach often utilized the tactic of “narrowcasting” to the extreme; he sometimes even had a target audience of one – for example, the chairman of Philip Morris or McDonalds, or the city councilman responsible for a particular crime-ridden neighborhood. In some cases, just the threat of Tony’s well-known brand of shaming via media was enough to persuade an abrupt turnaround without the ad ever running.
Though I haven’t thought about Tony Schwartz for quite a while, as I write this I am realizing how much I apply the things I learned from him in my everyday work. Thank you, Tony.
Here in the United States, we are about to celebrate Thanksgiving — one of my very favorite holidays, with all of our family traditions. My good friend sent an email that resonated with me, and I wanted to share it here. I don’t know the original attribution.
I am thankful for…
…the mess to clean up after a party
because it means I have been surrounded by friends.
…the taxes I pay
because it means that I’m employed.
…the clothes that fit a little too snug
because it means I have enough to eat.
…the child who is not cleaning his room, but is watching TV
because that means he is at home and not on the streets.
…the spot I find at the far end of the parking lot
because it means I am capable of walking.
…all the complaining I hear about our government
because it means we have freedom of speech.
…that lady behind me in synagogue who sings off key
because it means that I can hear.
…lawns that needs mowing, windows that need cleaning and gutters that need fixing because it means I have a home.
…my huge heating bill
because it means that I am warm.
…weariness and aching muscles at the end of the day
because it means that I have been productive.
…the alarm that goes off in the early morning hours
because it means that I am alive.
…Finally, for too much email
because it means that I have friends and family who are thinking of me.
Whether or not you are celebrating this holiday, having an attitude of thankfulness is a big factor in the level of happiness you will experience in your life. I, for one, am grateful to have a large number of people who care about what I have to say. Thank you for reading and for giving me your time and attention. (I will try to be more regular about posting!)
Photo Credit: controltheweb
Technorati Tags: thanksgiving
I didn’t intend to dwell on 9/11 long enough to let the tears form. I was just planning on writing a few words and linking to last year’s post about Amy O’Doherty, who was one of the victims in the fall of the World Trade Center. All I needed to do was find a good picture on Flickr, get in and get out.
But something happened as I browsed through picture after picture of towers of light, towers on fire, firefighters and policemen, flags, makeshift memorials on fences and marble memorials in cities from coast to coast. Images floated through my mind of the type of picture I wanted to find.
It would memorialize with dignity those who were killed — not just in New York, but at the Pentagon and on Flight 93. It would acknowledge both the heroes who died doing their jobs and the regular people who helped strangers in ways large and small. It would remind us of the amazing feeling of the whole country being unified in our resolve to make sure this never happens again, coming together to strengthen each other and defeat the enemy. It would recall the unfettered pride we felt in being Americans, with flags flying from our porches, our cars and our lapels. I miss that, and it makes me sad.
I looked for a picture that would represent the rawness I still feel when I remember that day, sitting in front of the TV in disbelief with my baby on my lap as I watched the tower collapse again and again in slow motion. And the fearful certainty that another terrorist strike would happen any day, this time possibly closer to home. I also wanted a picture that would give us hope that the world will eventually become a better, safer place for our children to grow up.
I looked through hundreds of pictures. I couldn’t find the right one. So my words will have to do.
Technorati Tags: 9/11
[Please forgive this entirely personal post. If you only want to read about social marketing, skip this one.]
By all rights, I should not be sitting here at my computer like this was just another day. If the universe worked in an entirely rational way, I would either be in a hospital bed, or, God forbid, even worse. I escaped death yesterday and I’ve only just started to process the implications.
Yesterday morning, I was driving down the freeway with my kids in the back seat, on our way back to the old neighborhood to visit family and do some errands. We’ve made the trip a million times, though this was the first time I’ve driven back since we moved. There wasn’t too much traffic in our direction, so I was moving along at about 70 mph in the second lane from the left.
As I transitioned into the adjacent lane to the right, another car came at me from the other side without seeing that I was already there. I quickly swerved back to the lane I’d come from to avoid being hit and my car started fishtailing. I couldn’t get it back under control. The car’s rear rocked back and forth in wider and wider arcs, until it spun out in a broad semicircle, cutting across four lanes of traffic and winding up facing the opposite direction in the far right lane.
As we were spinning, I watched the other cars behind me braking and trying to avoid hitting me and each other. When I realized that I had no control over what was happening, I braced myself for the inevitable impact, hoping it would not be bad and not letting the very real possibility into my mind of just how bad it could be. When the car finally stopped, unhit but facing an oncoming minibus, I held my breath until it screeched to a halt a few yards from my car.
I checked with the kids to make sure they were okay, and my son cried, “This is the worst day of my life!” I took a few beats to breathe and pull myself together, then pulled the car over to the shoulder, around the minibus, still facing backwards. Several other cars had dented each other in my wake, but thank God, nobody was hurt and no cars were more than slightly damaged. Once I pulled over, the enormity of what had just happened hit me, and I sat stunned.
I got out of the car with my cell phone, intending to call for help. I spoke briefly with the bus driver and found out that nobody was hurt on the bus or in any of the cars that had pulled over ahead of me on the shoulder. Have you ever had one of those dreams where you have an emergency and need to dial 911 but your fingers just won’t push the right numbers? I dialed the phone and realized when I heard someone say “What city and state, please?” that I had just dialed 411 and reached directory assistance. I redialed 911, and ended up getting a recording that all operators were busy and that I should stay on the line. I waited for what felt like forever, but was probably about 5 minutes, until I finally was connected to a dispatcher. It’s scary to think that those minutes would have been wasting if someone had actually been injured and needed immediate assistance. I just hoped that someone who had witnessed the scene called for help as they drove by and got through quickly.
Eventually a freeway service tow truck came by and assessed the situation. He called a highway patrol officer to block off traffic with his car as he arrived so I could turn my car around to face the right direction. We all exited the freeway and pulled onto a side street to give our reports to the CHP officer. Apparently one or two people who had hit other cars had taken off quickly, though someone had noted a license plate number, and the officer received a call while he was with us that the person had been caught. The kids were amazing and sat in the car patiently waiting during the hour after the incident. They didn’t seem to suffer any traumatic aftereffects, though they insisted I not take the freeway ever again.
I arrived at my stepsister’s house pretty shaken. I just cannot get over the fact that we and our car emerged from that without a single scratch. Though it was relatively light traffic, there were cars all around me at the time. And when I think about how it could have turned out differently, especially with the kids in the car, I still tremble. I am convinced that God was watching out for us. There’s simply no other satisfactory explanation for how we could have survived that unscathed. [Atheists need not respond – I don’t believe in coincidences.] It was apparently not my or my kids’ time to go (thank God), and I take that to mean that we still have things we have to accomplish here.
That day truly could have been the “worst day” of my son’s life, but thank God it turned out to be just a little excitement to start out the day and nothing more. But I am forever changed, as I have a heightened appreciation for the fact that life as I know it could be interrupted at any moment and should not be taken for granted. The lump in my throat will eventually go away as time goes on, but I hope my feeling of thankfulness will endure.
Liz Losh has tagged me to share eight random facts about myself (I guess turnabout is fair play). I love her idea of using songs from her iPod shuffle to guide the information choices, so I’ll be a copycat and do the same.
1. “Don’t Panic” – Coldplay
Douglas Adams is one of my very favorite authors. I first read Hitchhiker’s Guide in high school and then consumed each subsequent book, plus radio scripts and his Infocom computer games. I’ve seen him read at bookstores on a couple of occasions and have a collection of all his signed books. All except The Salmon of Doubt. Sniff.
2. “Where are You Going?” – Dave Matthews Band
I have a horrible sense of direction. Count on me to go the wrong way every time. My husband, who always knows exactly where he is, still hasn’t learned not to follow me as I confidently stride in the wrong direction down the street.
3. “My Sister” – Juliana Hatfield
I have one sister, who is exactly 2-1/2 years younger than me. She’s lived in Israel since she graduated from college and now speaks English with an Israeli accent. She also makes a mean shakshuka.
4. “Earthquake Weather” – Beck
Though I wasn’t in LA in ’94 for the Northridge earthquake, I was in the Bay Area in 1989 for the Loma Prieta earthquake. I was in a meeting at work in Berkeley that included a couple of visiting East Coasters. When the shaking started, we all jumped under the table. After it was over, the native Californians sat back in our seats to finish the meeting, but the others were too shaken up to continue. It’s about time for another big one – yikes.
[Update: Five minutes after I wrote this, we just had a 4.5 quake hit. Pretty small shake, but an interesting coincidence nonetheless.]
5. “The Needle and the Damage Done” – Neil Young
A few years ago, my friend Leora turned me on to African Folklore Embroidery, which uses brightly colored thread to sew designs against a black background. Leora, who is from South Africa, quit her market research job to bring this beautiful art form to the US. I bought a kit and got about halfway through, but just never got motivated to finish it. Maybe I’ll give it another go.
6. “Hazy Shade of Winter” – Simon and Garfunkel
I lived in Washington DC for a few years and loved it there. I would have stayed, but I am a huge weather wimp and could not handle the snow and cold. It just seemed silly to me to have to deal with the attendant difficulties when there was a perfectly wonderful other place to live where the temperature never dropped much below 60 degrees. So here I am.
7. “Rock Lobster” – B-52s
I keep kosher, which means I don’t eat things like lobster (rock or otherwise), crab, shrimp, other shellfish, pork, nonkosher meat, dairy and meat mixed together, or any form of bugs (you’d be surprised how they make the food coloring in some juices!). It can get complicated, but it makes you think about everything you put in your mouth — not a bad thing.
8. “Beds are Burning” – Midnight Oil
My favorite time to get work done is after midnight, when the house is quiet and everyone else is asleep. Unfortunately, that’s when my brain really kicks into gear. But my very favorite time of day is dusk, when the sky turns purple and the clouds reflect electric pink, the moment after the sun has ducked behind the hills. I wish I could capture the feeling of that color.
If this just wasn’t enough random information about me for you, you can go back and read the five things you didn’t know about me post from a previous meme. And then you’ll really be ready for me to get back to writing about social marketing.
I tag the following eight bloggers to share their own eight random facts: Lisa Mighton, CK, Ashley Cecil, Richard Kearns, Chris Forbes, Sandra Beckwith, Guanaco and Kelli Matthews.
Photo Credit: Leo Reynolds