Wednesday, December 12, 2007

Would You Want to Know How You Might Die?

I'm not sure that I do. I was reading the cover story of a recent copy of Wired magazine about a new DNA test that can tell you how you'll live--and die. The cost? Only $1000. The writer of the article at Wired took the DNA test which involves sending a saliva sample in a Fedex package to a company called 23andME which was founded by Linda Avey and Anne Wojcicki (of Google fame):

The experience is simultaneously unsettling, illuminating, and empowering. And now it's something anyone can have for about $1,000. This winter marks the birth of a new industry: Companies will take a sample of your DNA, scan it, and tell you about your genetic future, as well as your ancestral past. A much-anticipated Silicon Valley startup called 23andMe offers a thorough tour of your genealogy, tracing your DNA back through the eons. Sign up members of your family and you can track generations of inheritance for traits like athletic endurance or bitter-taste blindness. The company will also tell you which diseases and conditions are associated with your genes — from colorectal cancer to lactose intolerance — giving you the ability to take preventive action. A second company, called Navigenics, focuses on matching your genes to current medical research, calculating your genetic risk for a range of diseases.


While I would be fascinated to get a tour of my genealogy and find out where I got this contrarian streak, I am not so sure I would want to know what diseases are lurking for me in the future. I would find that more than unsettling.

What about you? Would you want to know what diseases are lurking in your future?

47 Comments:

Blogger Evil HR Lady said...

Let's see, maternal grandmother--cancer. Paternal Grandmother--Alzheimer's. Paternal Grandfather--cancer. Maternal Grandfather, still alive.

Personally, I'm hoping for cancer over Alzheimer's. And since even their report would only be statistical guesses, I'll save my $1000. (Of course, knowing my luck I'll get both. But at least that way, I won't remember the cancer.)

And I know where I got my contrarian streak. Maybe you're related!

6:50 AM, December 12, 2007  
Blogger Helen said...

Evil HR Lady,

I have a similar cancer history in my family and the types of cancer are always incurable so I figure, why bother finding out what I might have. I would rather live for the moment and hope for the best. Sounds kind of fatalistic but denial at this point sounds good! As for the contrarian streak, maybe we are related. Not a bad trait to have as far as they go, however.

6:57 AM, December 12, 2007  
Blogger Charlie on the PA Turnpike said...

This comment has been removed by the author.

7:37 AM, December 12, 2007  
Blogger Charlie on the PA Turnpike said...

Comedian George Carlin once opined about having a 2 minute warning before you die. He suggested it would be great; you could be in the stands watching a baseball game, hear in your ears (alone) the thundering voice announce You have 2 minutes left, so you instantly run out to the field, and slug the opposing team's pitcher. The player hits you back, you die, and your family collects double indemnity!

Another comedian, Steven Wright, claimed he knew when he was going to die, as his birth certificate came with an expiry date.

I say now I would like to know ahead of time when I would die. I imagine I can be certain not to fritter any of the last months. There's a sort of peace, I imagine, in knowing when things would end.

Of course, I am too cheap to spend the $1000, but that's another story....

7:39 AM, December 12, 2007  
Blogger JG said...

My genetic test says that I'm probably going to die by being run over on the street by a beer truck.

7:51 AM, December 12, 2007  
Blogger Helen said...

JG,

Because you were chasing it down to get a cold one? What a way to go.

7:52 AM, December 12, 2007  
Blogger Mary said...

Would you want to know what diseases are lurking in your future?

Nope.

Self fulfilling prophecy.

If you get terminal cancer helen, how will you know if it's truly your genes, or the fact that you might have "given up" ignoring health and lifestyle advice perhaps your ancestors didn't have, or choosing a healthier lifestyle that perhaps they didn't have access to?

Also, perhaps I might point out that often doctors' predictions and speculations are proven "wrong". Remember the twin boy whose mother was told he had to be aborted because otherwise he'd be born fatally ill and would die? Turns out, even after the failed abortion attempts, the kid turned out fine.

Gene identification/predition is in such an early stage. You'd really have to be either desperate or a fool to rely on these technologies to predict your cause of death, assuming injuries/accidents don't get you first.

Sometimes I think I liked it better when the Nazis were scorned for their "you are your genes" mentality, but all these scores of years later, it looks like for whatever reason, some of us are starting to buy in.

Again, balance. Use the technology where it can be of help especially in medical/reproduction cases where all hope seems to be gone, but to rely on it as scientific "gospel"? To "find yourself" via having your genes decoded? Sounds to me like some are looking for the easy way out, instead of taking responsibility for their own health.

7:53 AM, December 12, 2007  
Blogger Cham said...

Sure I'd like to know, because if there is something I can do to help prevent a disease or a test to monitor its progress then I would like to start the implementation.

8:04 AM, December 12, 2007  
Blogger Oligonicella said...

cham -- We're talking about genetic disorders here. You might monitor the progress, but what'cha gonna do.

At this point, the genome is insufficiently known, much less understood, to make this company's claims anything other than advertising. A lot like the mall MRIs.

8:24 AM, December 12, 2007  
Blogger Mary said...

cham:

You should read up on that twin who was medically advised to be aborted.

Wouldn't it be a kick if you learned what you were going to die of, and took medical precautions and treatments to prevent it, and whoopsie! the medical predictions turned out to be wrong.

If you already know your family's health history, you already have clues that can help alter your lifestyle and value prevention. Start the implementation already, before waiting for a magical medical solution to fix your diagnosed ills (which has been shown to turn out to be wrong?)

Maybe it's a question of how you live your life -- do you prefer to take personal responsibility, or do you prefer to believe the current crop of doctors knows best (remember the Nazi analogy) and it's all out of your hands?

8:28 AM, December 12, 2007  
Blogger Joe said...

I would rather not have the information on how and when I might die. Heinlein wrote a short story on the matter called "Life-Line", which was included in his anthology The Man Who Sold the Moon. There are things worth knowing about the future. Most foreknowledge detracts from the joys of finding your way there. Of course your mileage may vary; this remains my own not so humble opinion.

8:29 AM, December 12, 2007  
Blogger Cham said...

I want all the information I can get. If you like to keep your head in the sand, go for it.

8:45 AM, December 12, 2007  
Blogger Sid said...

Nope. I know that I will and live now with the determination and joy to live hereafter.

But I think too many lives are squandered by living like you will never die. Think of how many lives are ruined by the poor choices of others. Everyone lives as though they may one day fid a majical path for thier life. How many individuals do we all know with multiple marriages all ending in divorce? The ones I know act as if they have unlimited play time and just need to keep looking for Mr/Mrs Right.

Chris Rock had a funny song several years ago (I think it was "No sex in the Champagne Room"). One of the verses was him naming all the astrologocial signs and saying "you're gonna die." And "there's no sex in the champagne room."

If there are some conditions that can be avoided, enhanced, or lessened with the knowledge, then it would be worth the money. But if the information is just scientific horoscopes, then I can get the exact same information by reading the obituaries each day. As long as I don't read my name, wonderful.

8:54 AM, December 12, 2007  
Blogger Mary said...

If you like to keep your head in the sand, go for it.

Lol cham.
But not being able to distinguish between good information, and early hype to sell something, sure has gotten some American body parts sandy other than just ears, eh?

9:41 AM, December 12, 2007  
Blogger Joe said...

Hi Cham,
It's not about maintaining a sandy disposition. It's that if I knew I was going to die on a specific day some 30 years from now and how, what would I do to try fruitlessly to change that eventuality.

Full-disclosure time. I am a Christian and I believe that 1) God is sovereign, omniscient and omnipotent, 2) that God has an idea of when I will die and from what cause, 3) I have a need to know relationship with God and when I need to know he will let me know, and 4) that when I trust God to know more about what is going on than I do, I come out okay.

When factoring all those together, I reasonably conclude that some things do not require me expending too much candlepower contemplating. Would knowing prevent me from living the best life I can in the time I have, or enhance it? I don't know, but since all I do know is living without that knowledge, I'll pass.

9:49 AM, December 12, 2007  
Blogger Eric Blair said...

Well, I teach genetics, and this is a great subject for discussion in class, as well as here.

Years ago, I used to show a video called "The Search for the Killer Gene," about Huntington's Disease. HD is always fatal. If one of your parents has it, you have a 50% chance of getting it. There is no treatment (yet), and it is a very unpleasant way to die.

But there was then, and is now, a reliable genetic test for that disorder. So you can *know*, if you choose to do so.

In the movie, they interview several people. A very courageous young woman with HD, who talks openly about dealing with it. A very depressing woman who takes the test (after having two children) and learn that she does indeed carry the HD allele--and will get HD in her future and die from it (and that each of her children has a 50% of inheriting the gene from her, and thus HD).

And Arlo Guthrie, the folk-rock singer who wrote "Alice's Restaurant." His father, the very famous Woody Guthrie, died of Huntington's Disease, so Arlo has a 50-50 chance.

Arlo was a very interesting interview. One liners abounded: "They say that it's a disease that makes you crazy. Teenagers make you crazy."

Sure, it was bravado, but Arlo---and the other two people interviewed---show the range of responses.

If anyone's interested, they should look into the work of Nancy Wexler, a psychologist whose mother died of HD, and who invented the genetic test for HD... She also won't take the test---again, though she helped to invent it!

http://www.hdfoundation.org/bios/nancyw.php

Genetic testing has gotten even more intricate since then. There are twisty problems of privacy (insurance companies are very interested in this topic, so that they call medical conditions "pre-existing"), basic science, ethics, and so on.

The other thing to remember is that not all genetic tests give absolute results. If you inherit the HD allele, you WILL get Huntington's Disease. If you inherit an allele associated with some forms of cancer, your chance of getting that cancer increases, but you might not get the disease. And so on.

Genetic determinism is a dangerous area, and most geneticists are very, very cautious. This is why I worry about the companies that claim to tell you your "health risks" via DNA tests. Interesting data, but is it transparently predictive?

Caveat emptor, friends.

Sorry for the long post.

11:33 AM, December 12, 2007  
Blogger Soccer Dad said...

Why do you have to pay $1000 when you can find out for free?
:-)

11:42 AM, December 12, 2007  
Blogger Tainted_Holo said...

I read somewhere I'm going to die.

Apparently it's genetic.

Is this true?

Apparently all my grandparents had it.

Can I test myself for the I'm-going-to-die gene?

What can I do to prevent it?

A wise doctor once told me, if I eat only healthy foods, don't sleep around, don't imbibe of vices, avoid stressful times, take plenty of exercise and go to bed early regularly every night I might live to a ripe age.

I replied:
"What for?"


I don't even believe the weather reports for tomorrow... I think it would be wasted on me.

12:24 PM, December 12, 2007  
Blogger TMink said...

Wow, as I was adopted, this could be cool info. Especially the racial/cultural background stuff. But I am not sure it is $1000 cool.

Trey

1:03 PM, December 12, 2007  
Blogger Oligonicella said...

soccer dad --

Man was that a stupid test. The answers were virtually none that I would really give and it was way too short to be or any actual use.

On the other hand, it said I was going to die of a heart attack during sex.

1:38 PM, December 12, 2007  
Blogger Soccer Dad said...

oligonicella -

But you didn't have to pay $1000 for it! :-)

I think that according to that test, everyone I've seen who's taken is going to die that way.

2:23 PM, December 12, 2007  
Blogger Helen said...

Soccer Dad,

And not only did I save 1000 bucks but I learned I will have a beautiful death (see above post). Thanks for another dumb internet quiz.

2:36 PM, December 12, 2007  
Blogger serket said...

I think it would be interesting to have it trace your genealogy and current conditions, but I wouldn't want to know the likely cause of my death. I think I have an anti-contrarian attitude. My mother is timid and so is her mother.
Three of my grandparents are still alive and mostly healthy and my grandpa committed suicide. One of my great-grandpas died of colon cancer in his mid 80s, his wife lived to be 92, but I'm not sure what her death was from. I think a few of them died from smoking related cancers and I'll never try that.

3:11 PM, December 12, 2007  
Blogger Mercurior said...

if you took that genetic test and it sad you would live to x amount of years, and you live longer or die sooner could you sue them.

no one knows how long a person is going to live, i could be hit by a truck tomorrow, or live for 1000 years, no one knows. they just guess.

3:12 PM, December 12, 2007  
Blogger Helen said...

Mercurior,

I don't think the test tells you how long you will live, only if you have a risk for a particular condition so, no, I don't think you could sue them--because I doubt they would tell you that you had 100% risk of anything. However, no one, not even doctors really know how long someone will live. But as they say, it could provide some useful data, but not data right now that I would want to see.

3:25 PM, December 12, 2007  
Blogger David said...

Reminds me of two things:

1)The old Heinlein SF story "Life-Line"

2)The words to this song

3:48 PM, December 12, 2007  
Blogger Charlie said...

Steven Wright had a gag where he asked his friend if the friend would want to know how he would die.

The friend replied "No".

Steven Wright then replied, "Okay, I won't tell you."

3:10 AM, December 13, 2007  
Blogger Keisha said...

1.This company is largely financed by Google. Anne Wojcicki is Sergey Brin's wife. DO NOT SUBMIT YOUR GENETIC INFORMATION TO THESE PEOPLE. There's a very good chance that Google intends to have access to this data.

2.They send you a vial w/ your name on it FGS - what's that tell you about the degree of anonymity that they can ensure?

3. I've seen the founders interviewed. Neither struck me as being competent to handle this information in a responsible manner. Specifically they didn't appear to have thought through the basic issue of how the resulting data should be conveyed to lay people. Even very well educated people have difficulty forming valid statistical inferences. Basic medical ethics tells you that you don't simply give someone unqualified data and expect them to interpret it properly. Perhaps this was just a bad interview, but frankly they came off as glib.

4. It's my impression that 23andME is a marketing operation reselling bioinformatics information for another concern. So your really dealing w/ marketers and salespeople. IMO this doesn't bode well for their ability to handle this data in a responsible manner.

3:16 AM, December 13, 2007  
Blogger jw said...

I already have a VERY good genealogy due to a strong world wide Family Association on my father's side and a professional genealogist on my mother's.

At 2G (30 ancestors) I have 24 cancer deaths(1), 4 deaths as a side effect of tremor, one death as a side effect of endemic industrial poisoning and a heart attack during an accident with an average age of death of 75.6 years. Oldest at death 94, youngest death (my father: Brain cancer with coexisting prostate cancer) 66 years.

So? What would this test tell me? I ALREADY KNOW I have a tremor and it is getting worse. I already know I have BPH which will turn into prostate cancer.

I'll keep the grand, thank you.


1: Some of the early deaths are "most likely" cause.

4:41 AM, December 13, 2007  
Blogger Ari said...

anyone here heard of Gattaca? i just saw it myself, and this really reminds me of that...

7:03 PM, December 13, 2007  
Blogger Bugs said...

Not knowing the answer is part of what keeps me going. There's always the chance that tomorrow my life will be better.

7:40 PM, December 13, 2007  
Blogger serket said...

ari, I saw it last year.

12:06 PM, December 14, 2007  
Blogger br549 said...

I kinda already know, so it takes all the fun out of taking quizzes and guessing. However, every day's a good day until there aren't any more.

1:53 PM, December 15, 2007  
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3:39 AM, June 08, 2009  

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