Very long post today (3000 words) but you have the weekend to read it– and it’s worth reading.
“Genetics loads the gun and environment pulls the trigger.”
I think a more meaningful quote comes from the bank robber character at the start of the 1971 Dirty Harry movie, who’s trying to figure out how many shots Clint Eastwood has fired from his revolver:
“Hey– I gots to know.”
I’m a tech geek, and I’ve followed startup companies for years. 23andMe came to my attention because a 23andMe co-founder is married to a Google co-founder, and nearly six years ago Google’s $3.9M early-stage investment in 23andMe was considered a controversial choice for Google’s venture funds. However 23andMe used the money to develop one of the industry’s fastest and most thorough automated analyses of genetic data. They quickly established their credibility by earning Time magazine’s 2008 “Invention of the Year” award.
Back then the company was charging as much as $499 to analyze sections of a customer’s genome, along with a monthly fee for access to their research and genealogy databases. It was an intriguing idea, but I’d also decided that decoding my genome was also way out of my price range. I was financially independent, but I didn’t get there by shelling out $499 for this sort of purchase. What would I do with the data?
23andMe eventually dropped the price to $299 to attract more customers, but I still didn’t see the value. Nearly 200,000 other people ponied up, however, so 23andMe’s databases grew large enough to be statistically significant. Researchers and specialists use the (anonymous) data to search for the genetic roots of many diseases. Pharmaceutical companies are also using the data to develop effective drugs and possibly even gene therapies. These corporate customers are willing to pay a lot more than $299, and rapid growth is financial catnip to a venture capitalist. Late last year 23andMe secured $50M in a venture round and announced their pursuit of a database of one million genomes. Shortly after they cashed that check, 23andMe accelerated their sales (and the growth of their database) by dropping the price to $99 with free lifetime membership.
$99?!? I can make room for that in our budget. Ironically the announcement came shortly after the start of the holiday shopping season, so we made it an ohana Nords present: the gift of self-awareness.
Like Dirty Harry’s bank robber, I’d suddenly found an intense personal reason for my curiosity. My father developed Alzheimers four years ago in his mid-70s and is currently deep into mid-stage symptoms in a care facility. (He’s doing well, but the disease’s progress is relentless.) His father lived until age 97 but spent his final 14 years(!) in a care facility under the vague 1980s diagnosis of “dementia”. My mother and her father both died in their 40s, so we’ll never know their genetic flaws. However my mother died of breast cancer and I wanted to know if I’d passed those genes on to my daughter. My spouse has a few questions about her own genealogy, and I’m pretty sure our daughter has wondered many times if she’s really related to the people who tried to raise her.
How it works
The process is straightforward: spit it out. Literally. You sign up on the company’s website, charge your credit card, and wait for the snail mail. A few days later a specially loaded test tube shows up in your mailbox and… you expectorate into it. (Only about 15 milliliters– one spitball.) It comes with directions (in an ambitious 14 languages and pictures) and plenty of helpful spitting advice. You seal the test tube, drop it in a plastic bag, and return the (postage pre-paid) box to 23andMe. After a couple of weeks they e-mail you the announcement that your data is on their website.
The actual analysis has been industrialized and automated. Your spit ends up on a slide tray coated with nearly a million different copies of various genetic fragments. When your genes match any of these fragments, a chemical reaction occurs to trigger a sensor on the slide. A scanner reads the sensors and pulls the results out of the 23andMe database.
Better still, this is not “one and done”. Samples can be saved for a very long time and sent back through the analysis. As researchers find more interesting genes to analyze, bioengineers will improve the sensitivity of the chip and the number of genes it can detect. All 23andMe does is provide more data to the researchers and pharmaceutical companies who are paying them for answers to specific questions, but a copy of your data is also uploaded on your account.
Psychological, ethical, and legal issues
Although genetic testing is “affordable” and the technique is established, the concept has incited an explosive ethical and legal debate. I doubt that the controversies will ever be resolved, but we have choices. I can’t presume to recommend how you should tap-dance your way through these minefields, but here are some issues to consider before you decide to get tested.
The first question is whether your awareness would actually lead to behavioral change. We all “know” that we’re supposed to eat healthy and exercise– how’s that workin’ for ya? Why in the world would we expect that our genetic data would inspire us to pursue an enlightened self-interest?
If you found out that you’re carrying genes which have a marginally statistical link to a fatal disease, would you change your habits? How far are you willing to go? Most heart attack survivors fail to make significant lifestyle changes (like quitting smoking) to improve their health and reduce their cardiac risk, so what makes you so sure you’d change your behavior? What statistical risk would cause you to change: 25%? 50%? 100%? A few women at high risk for breast cancer have opted for preemptive double mastectomies– what if your genes are linked to a 10-25% chance of breast cancer? If you’re at an elevated risk for prostate cancer… ouch, I don’t even want to think about it, and my Dad’s a prostate-cancer survivor.
Other questions: What if you learn that you’re adopted? What if the guy you’ve called “Dad” all your life learns that he’s not your biological father? If you’re carrying the genes for a serious disease, do you want to have kids? What if you decide to get tested but your spouse isn’t interested? If your unborn child turns out to have a genetic disease, would you choose an abortion?
Geneticist Bryan Sykes has documented dozens of situations in his books. What if your ancestry has a statistically significant percentage of other races in what you thought was a homogeneous family tree? What if your ancestors include both Thomas Jefferson and Sally Hemmings? What if you’re descended from Neanderthals? What if your culture’s creation beliefs might be more mystical than factual? What if you believe in the power of specific prayer for your own situation– or for others? These may seem like minor controversies if you’re not part of a the affected culture, but there’s been a huge uproar in many societies around the globe.
What about other risks? What if your genes keep your body from responding to certain chemotherapy drugs? What if you’re exceptionally sensitive to a drug, and a “normal” dose could kill you? What if you’re violently allergic to a food you’ve never tried? What if your college daughter turns out to be genetically slow to metabolize alcohol? Hey, I’m just reporting the news here, I don’t judge.
Could this affect you financially? If people learn about your genetic profile, how will they treat you? More importantly, how will your health insurer treat you? Can you still get life insurance? How much will you pay for long-term care insurance, if you can even get it? Will the insurance company insist on checking your genome for the longevity gene before they quote you a price on an annuity?
It turns out that your genome is legally protected by federal law against genetic discrimination in health insurance– and employment. Although there may be a statistical link between your genome and some diseases, that statistical link is not considered significant enough to affect health insurability (and certainly not employment). You can’t be turned down for health insurance because of your genome any more than you can be turned down for tobacco or alcohol consumption. However the law does not cover life insurance, disability insurance and long-term care insurance. The law may also be changed someday to allow different rates for different risks, and maybe an insurer could require genetic testing before setting those rates. Even if you’re protected by the full power of the law, do you really want to have to defend yourself through years of stress and costly litigation?
23andMe promises to keep your data private, but the Internet’s history is littered with the corpses of confidentiality vows. What if your genome is splashed across the Web, and on your Facebook profile? What if you’re blackmailed or humiliated or bullied because of your genome? This isn’t hypothetical or ancient history– you only have to glance at today’s headlines to read about ethnic atrocities. Even when the privacy controls work the way they’re supposed to, any data you make public could be compared to other public ancestry databases to personally identify you. And although 23andMe promises to keep your data private today, what if they get a court subpoena for a criminal investigation or a paternity suit? What if they just decide to change their policy and sell your data to the highest bidder? Oh, wait, they’re already doing that– although they promise to keep it anonymous. As far as you can tell.
Let’s bring this down to personal finance: if you have a 50% chance of developing a fatal disease in your 50s, then what’s your “safe” withdrawal rate? More importantly, when would you choose to retire? Would your spouse want to care for you when some horrible genetic event comes to pass? Would you abandon your family responsibilities and spend your 401(k) “experimenting” with “alternative lifestyles” while checking off your bucket list? If you have the fabled (and rare) “longevity gene”, then should you invest 100% of your portfolio in an inflation-adjusted annuity? Should you buy extra disability insurance? What about self-insuring for long-term care?
Enough questions. Luckily 23andMe has thought about this too. They’ve added checkpoints to their results that you have to acknowledge and unlock on your profile before you can learn the facts. When you review your data on their website, you have to click several confirmation windows to find out about genetic susceptibilities to diseases like Alzheimer’s. You have to specifically opt in to share your data, and frankly Facebook could learn a lot from 23andMe’s incremental privacy & sharing settings. You can’t actually delete your data from 23andMe’s servers and pretend that this never happened, but you can keep it as secret as today’s Internet tech can reasonably achieve.
Remember this: once you share, you can’t take it back. You can turn the feature on & off, but shared data can be copied and stored by the people you share it with. You cannot un-ring the bell.
What you get
23andMe organizes the results very well. Once you unlock your main page, you can elect to unlock each of the subcateory summaries. (Over 35 pages of printed summary alone, with hundreds more in the details.) Your personal web pages are broken down into dozens of categories with deeper links to background information, references, and other studies. You can spend hours reading up on your “favorite subject”. They compare your data to the averages and the statistics. You see all the research citations and you’re guided through some of the implications of the information. Once your genetic profile is in their database, they keep updating it with the results of new studies & data. You can answer survey questions and volunteer for research. Even better, those researchers and pharmaceutical companies will share their data as well, and you might be invited to join the FDA trials. You can join 23andMe forums to discuss your genome with others who have a similar profile. You can share your genetic data with anyone else who’s also a 23andMe customer. (I shared mine with my spouse and my daughter.) You can build your family tree and post it on 23andMe for their database to track down your distant cousins.
Let’s cut to the chase: Was it worth it?
Heck yeah. Not only for me, but also for my spouse and our daughter.
In fact our daughter is even luckier to be alive than she’s already been told (many times). I should’ve paid for this even when it was $499. I should’ve mortgaged our home to pay for it.
If you’re closely related to me then I strongly recommend that you sign up for 23andMe and get tested. (If you’re one of my cousins, or if you’re even considering having kids with one of my cousins, then please have this done today. Seriously. Stop reading and go to 23andMe’s website now. If $99 seems too expensive then we need to discuss your budget priorities.) If you’re contemplating an intimate relationship with my daughter… well… you were already in for some interesting Q&A with her– and now it’s going to get even more focused. (Good luck with that.) Oh, and it turns out that she really is my daughter, to 85% certainty. Sorry, honey.
For everyone else, I’d suggest that the ethical minefields are not your biggest concern. You should worry whether you’re a ticking time bomb. Not just your own blissful ignorance– what if the “professionals” in your life are also ignorant or negligent? If you develop an exotic disease or cancer, you’re hoping that your doctor thinks to check your genome to find out if you’ll respond to a medication– or whether a “low dose” could kill you. If you’re even considering procreating then I think you owe it to your hypothetical life partner (and your hypothetical kids) to understand the risks you’re imposing on them.
Scary example: I’m a carrier of cystic fibrosis. Luckily my spouse had already decided that I’m done procreating (me, too, sorry ladies) and everything worked out fine, but I wish we’d known this info about, oh, 21 years ago. [Insert “dodging a bullet” metaphor here.] If we’d had this information before starting a family then we would’ve definitely opted for additional testing, and the results would’ve justified the minimal medical risks of the testing.
I’m also a carrier for hemochromatosis. I have a couple of susceptibilities for exotic chemotherapy medications that I hopefully won’t ever encounter, and I’m at nearly a 3x elevated risk of deep vein thrombosis. I have a marginally lower statistical risk for prostate cancer– but I’m still going to keep an eye on my PSA.
Since my daughter and I have shared our profiles, she knows which parent to blame for a host of minor issues. Nothing serious or heartbreaking, but definitely things that I wish I’d known at her age.
I was highly amused when my spouse’s ancestry turned out to be slightly above the global average of Neanderthal genes… until we learned that I’m much higher at 2.9% (the max is 4%). That just confirms the suspicions of many people in my military chain of command. (Sorry, XO, I really was born that way.)
My ancestry? 100% purebred free-range Scandinavian Viking on both sides. (I guess we could’ve seen that coming from my surname.) Very few of my shipmates seem surprised.
My spouse’s genes? Well, no surprises there. The family longevity claims turned out to be fact. She’s already drafting her acceptance speech for our alma mater’s “Oldest Alumna” award. She assures me that she’s going to be around for a very long time… chronologically as well as relativistically. As for the rest of her genome, my relatives & friends would agree that I married up. Way up.
Well, enough of the humor & snark. You regular readers of the blog are already wondering: “Hey, Nords, cough it out. Your grandfather died of dementia and your Dad has Alzheimer’s. Are you gonna get Alzheimer’s or not?!?”
I clicked through all of 23andMe’s website acknowledgments and warnings to learn the results, but I’m not ready to share that info yet. When I do share it, I can’t change my mind and take it back.