Monday, August 10, 2009

the genome bug


Jen brought up an interesting topic for further discussion on genetics
and illness, in our comment conversation in the last post on Patrick
Tracey's book, Stalking Irish Madness. There are those of you out
there who are not as thrilled with the idea of genealogical research,
as I am. I know, it can be a tad dry. But take a minute to play it
forward, on a more personal level.
.
There is now a do-it-yourself DNA test, that can detect major
inherited genetic risk factors for diseases. It's what you might call
a genetic health scan. They can scan our genomes and tell us what
diseases are likely in our future. It is amazing that our DNA, once a
mystery, is suddenly a hot commodity. There are over two dozen
companies competing for it in cyberspace. This hot new technology
is fascinating, whether it's to find our illusive roots or chart our
future. Why wouldn't we want to have a peep in the crystal ball of
our future health?
.
But, what if the test showed your risks for heart disease to be
genetically low? Would this talk you out of taking care of yourself?
Granted, most testing companies don't take lifestyle issues, like
smoking, or family history into account, even though both can
bump the odds up or down. What if your genetic DNA shows the
odds of developing Alzheimer's is high? Would you rather be
blissfully unaware?
.
.
Be careful about reading health books.
You may die of a misprint.
~
Mark Twain
.
.
photo: wisteria vine at willlow manor

60 comments:

  1. I don't know about bliss but knowing things that are not necessarily guaranteed can take a person off course. Despite the DNA map - random stuff is still a major influence.

    That random stranger who coughs in a shared elevator ... that cop chase gone awry ... that pretty carpet that's full of chemicals ...

    Besides, unless one is a medical expert, interpreting a myriad of factors, most of us still are guessing regarding what it all means. And when we do think we've made sense of it all, we trip on an extension cord, hit our head on a rock or fall off a ladder.

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  2. I've been unable to make up my mind about that possibility of developing Alzheimer's Disease. On the one hand, being very curious, I think I would like to know of a predeliction. On the other hand, being a fatalist, I think I'd rather not know. But your posting does cause one to think.

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  3. I cant decide. I do and don't. It would be nice to know some things before having children but I sure don't want to know that I will probably die young or something crazy like that.

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  4. Yeah, "bliss" is not really a Stankus kinda word, is it? The randomness of life will always be a major influence. Now I'm imagining you in an elevator with a surgical mask.

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  5. Catalyst, what a nice new avatar! I almost didn't recognize you. :^)

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  6. It would be nice to know the good things and scary to know the bad things, so basically, I think that I don't want to know!

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  7. Aw...Mark Twain, always words of wisdom... :) Sometimes I would rather just live my life rather than be able to worry of what may or may not happen tomorrow...you bring an interesting question up with this topic, would it really effect the way we live our lives, if we knew?

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  8. Bill, and I forgot to add that I most times look at "random" in a totally different light than you. ;^)

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  9. Your discussion reminds me of something Arlo Guthrie once said on a documentary I saw about Huntington's Chorea, the disease that killed his father and his grandmother. The filmmaker asked why he declined taking the test to find out if he had inherited the gene, and wasn't it hard living and not knowing? Guthrie replied saying something about how he'd always lived with the possibility and has learned to live in the moment. Then he said, "I have four teenagers - now THAT'S hard!"

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  10. I will probably opt for blissful ignorance -- I'm already aware of a few things I may be at risk for and do the yearly testing as suggested. If there are more nasties waiting, I don't want to know.

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  11. Because I feel that health has more to do with our environment,attitude and diet than genetics per say, I don't know that I'd care to have a genetic screening. I do believe that some diseases like mental illness and cancer do have genetic links in families and therefore require screening of past family history.

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  12. basically, for my own self, I do not do tests or havent so far in my nearly 64 years except very very occasionally. I'd rather not know for the most part. Let me be surprised even though possibly not pleasantly. On the other hand the book sounds fascinating and I love finding connections between myself as I am and my ancestors as they were in many areas including health.

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  13. In the end we are all going to 'shuffle off the mortal coil' in some way. To have the power or insight into how it happens may not be a good thing . . Life is full of if, buts, and maybe 's enough as it is , why add to the stress of deciding with yet more variables . The changes in DNA can also happen randomly without appaerent warning . Why give ourselves even more things to worry about while we're here. I think it'ss better to live the best life that you can rather than worry about the worst that life can throw at you

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  14. It's true--you'll think this is SO morbid--I'm always wondering just how I will die one day. I find it fascinating! Joe laughs and says the leprosy is going to get me before anything else does, but I don't see it as morbid--I'm just curious about it! (I do think if I have some awful end ahead of me, I hope I also have dementia--at least then I won't know about it.)

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  15. Sue, I guess we all think about it from time to time. But, when it happens to you, in stead of saying, "What the heck?", you'll be saying, "I KNEW it!" :D

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  16. I told you about Marfan Syndrome that President Lincoln is supposed to have had though it is speculation--I would like to know if I had it coming up but Robert Lincoln refused to let his father's body be disturbed when he was still alive and the hair samples and other things still around are too special to be analyzed since they cannot be renewed.

    If you develop cancer, the doctors will usually tell you how long you have to live. I assume that is so you can get your house in order. It might also be a way to cause the patient to prove him wrong by not letting himself die.

    Lots of speculation about such things.

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  17. Dear Willow

    I think you know my feelings on this one.
    I am very, very happy not to have a clue as to what polished off my immediate rellies.
    There is little notice --sort of mini bumper sticker thing around here which I love:
    GOD HAS A PLAN TO KILL ME

    too true sadly.
    Since no one gets out of here alive
    I think I'd rather stay ignorant.
    Just me of course, because I tend to worry A LOT!

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  18. While I find this subject fascinating, I would not opt to have genetic testing done. By the time we are in mid-life, we have seen all of the genetic weaknesses that are dominant, in our families. I believe that living a healthy lifestyle over rides any genetic predisposition to a particular disease, with a few exceptions.

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  19. Anytime I visit our local Legion Hall there are at least fifty or so "old geezers" in there who have all lived through a world war. They are usually drinking beer, smoking cigarettes of one kind or another and eating BBQ'd hot dogs. They are all pushing 90 and not one of them I will bet, has ever had a genetic test. I know there were hundreds of thousands of them when the war broke out but for this many of them to still be "cheating death" at their age tells a tale. My local Legion Hall is not exceptional either. These Legionaires are neither worried about death nor fearful of it's coming. I am grateful everyday for their contribution to my freedom.

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  20. Tis Best I Dont Know.& Tis Best The Insurance Companies Dont Know Either!

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  21. I've had so much already..what's left, except the last one? I'm still standing after all these years..I'll take mind and will..and as we well know,what we think is true one moment, swiftly changes..soooo..

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  22. I not so sure about this... My Doc told me never to regret my first surgery. As the years went by 39 surgeries now turning to Number 40 come Sept. 19. I am grateful to be alive, and be with my family. Yet, there is times, I wish I had never know about the Breast Cancer, and just let nature take its course. Now saying this,others would have to know, what complication came for me, that were...

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  23. As ever......well said Mr Twain.

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  24. I think I would rather take my chances. I don't need anything more to worry about.

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  25. Oh they'd have a blast with my DNA, Willow! You name it, it's in there!

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  26. I already fear dementia - am I really losing it, or am I just not good at remembering things? I would be so sad to learn that it might be my eventual fate...

    I'm much more interested in learning what my DNA says about where my "people" come from. Are we all European? Any African in there (as I suspect)? I'd love to know!

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  27. I think there are times when it is absolutely important to know the answers to some of genetic questions, but most of the time I would rather not know in advance about my life expectancy, etc. I wonder with the advancement of genetic testing just how that will factor into the idea of a "brave new world" for us humans.

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  28. as for me, i think if there's a chance to continue being healthy physically and mentally, this new-fangled technology should definitely be given a shot...

    charmedwishes18.blogspot.com

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  29. I am at one with Mark Twain....why would any-one want to be sentenced to having illnesses in the future, the very anticipation can create them through the worry! Goodness, we could be dead next week why worry about the possibility of this or that 20 yrs. down the track?

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  30. the key is would knowing change anything...if i knew the bad would it drive me to death or free me to live...the same could be said of the good...knowing my days are numbered anyway i will boldly face tomorrow for what it brings...

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  31. Mark Twain, what a guy! That quote had me howling!

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  32. I recently read an abstract where a group are researching the possibility of 'attaching' a polymer containing DNA altering substances to the metallic struts of coronary stents. So for the 30% of patients that re-occlude following treatment & need a re-do this may offer huge benefits. Rather than having a drug-eluding stent just treating the symptoms & the associated long-term maintenance issues of this, the inherent problem of restenosis would be treated from the very basic disease process. Very interesting subject Willow, thanks for the post.
    Millie ^_^

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  33. i would definitely be blissfully unaware as I slowly went potty to those around me!

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  34. LOVE the Twain quote. Perfect.

    I want my DNA heritage done so I know exactly what part I am of what. As to future supposed illnesses? No thanks. I prefer to improve my lifestyle and hope for the best. The mind is so powerful I believe we could worry ourselves into an early grave. Genetics cannot tell you how to control your emotional health and I believe that to be a key factor in any current or future illness possibilities.

    Also, genetics cannot account for past trauma. It might have you looking good but the trauma we experience as children continues to impact our health for life. Don't know if you've ever gotten to peruse the Kaiser Women's Study but genetics would only explain part of why women abused as children have such a higher rate of serious illness in adulthood.

    But these are excellent questions and very thought provoking. Something I've asked myself before and have only recently come to decisions about.

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  35. ...oooo don't want to know really - only have to look around at the rellies to see the DNA cocktail of possibilities,the only thing I'm certain of is that prostate cancer won't carry me off.I love "God has a plan to kill me".Gotta happen eventually.As for DNA testing to find out ancestral paths and origins -that's the option I'd take. Sounds like fun - the other- no bundle of laughs there.

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  36. Very thought-provoking! I don't think I would bother with that sort of test, actually. But I might change my thoughts on the matter as i get older! Great quote from Mark Twain, and especially true in our internet based world!

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  37. Most people have concentrated on whether they would choose to know the results of their genetic predispositions or not. I suspect choice will have little to do with it. Once knowledge exists it is near impossible to ignore it, either individually or as a society. Whether we like it or not our genetic maps will become a significant currency in the lives of our children and grandchildren.

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  38. Tough call on this, especially because I'm adopted and know nothing about my history. But who wants to hear if it's bad news and not preventable? On the other hand, it's so afforable.

    The skeptic in me also worries about the confidentiality of the results of such sensitive information.

    More thought required!

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  39. Ciao, I'm writer (so I write BOOKS), I worked as copycenter clerk and bookbinder (I MADE BOOKS), I'm a reader and I have a big big big library in my house (BOOKS OWNER) but.... about books and health I follow the suggestion of one of the big analysts and writers in Italy: "never read these THINGS if you aren't a specialist. It can be dangerous!" :)

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  40. Arlo Guthrie's concern about his children getting Huntington's Chorea could be less of a worry if testing were to occur. As with Breast Cancer there are many mitigating factors besides the genetic causes. Genetic Testing should be used to help the patient not harm the patient. "Do no harm". Not getting health insurance due to genetic discrimination is causing the patient harm by the information leaked to the insurors. Disease is a mindset; the legionnaires are case in point. They smoke yet they dont get cancer, why not? If there were a genetic link all those who smoke would get cancer 100% of the time. So it is an odds game this genetic testing. If you are told you're going to get cancer, that is called "self-fufilling prophesy", and the patient, believing this to be true, convinces their mind they are sick, and then, voila, they get sick. The final gatekeeper to any genetic precursor is the mind. The powerful mind "entity" is, I believe, all powerful. No one should ever discriminate against anyone with genetic markers for this or that disease. In my opinion, and that of many others, genetic discrimination is against the law! Instead of finding genetic faults, let's find genetic cures, via stem-cell research or whatever to cure genetic diseases.

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  41. Is that truly a M. Twain quote?

    Pesonally, I would love to know everything that could be learned from my DNA. Primarily, I'd want to attempt to change anything bad and live my life fuller.

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  42. I love that sentence of Mark Twain!Have a nice day :)

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  43. Don't wanna know! If you're lucky enough to have them still around, a look at your parents is enough anyway. Why am I turning into my mother, and why has she turned into my nan?

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  44. I am so suggestible that I'm better off not knowing really. It's bad enough reading medical websites - I always think I've got something about the breakdown in my body. Maybe if I looked after it a bit better it might help.

    Are you still doing your walking Willow?

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  45. I think blissfully unaware... I mean, I'm going to get hit by a bus anyway...
    But I don't want to stress out about my health while I'm waiting for that to happen.
    I do know that breast cancer runs in my family and I'm a prime candidate.

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  46. Being a fatalist I am sure that knowing the future isnt going to change the way I react .. boring, arent I?

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  47. I think Mark Twain more or less sums up my view willow. It is so easy to look up "Headache" in a medical dictionary and convince yourself you have a brain tumour.

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  48. Interesting post & great discussion. As someone who does have a genetic disorder (alpha-1 antitrypsin deficiency) that is also very much affected by lifestyle choices (specifically smoking) I can see very much the value in genetic testing. Would I have quit smoking before I did had I known I had this condition? No way to say for sure, but there certainly is a chance. While I'd still have developed emphysema from the condition, the damage would have been lessened. On the other hand, there can be insurance issues with uncovering certain genetic disorders before their effects become apparent.

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  49. Interesting discussion, as always, dear bloggies. I think I am siding with Mr. Twain on this issue as well. Fun to hear your views.

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  50. Hello Willow,

    If cancer, for example, had affected several members of one's family, I think it would be sensible to check the likely odds. Otherwise, I'd rather not know!

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  51. Great picture of you just above the Thoreau quote.....

    keep it up sister, your blog is an important part of our day

    you are the best...

    Ron and Lou Ann

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  52. Thanks, Ron, I'll do my best. ~x

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  53. Your question of whether a DNA test that indicated that a high risk of developing Alzheimer's Disease is especially pertinent to me in light of my eighty-one year old mother's recent diagnosis. Would I prefer to remain blissfully unaware? My sister and I have both considered this question recently. My sister is an RN having worked several years in a VA nursing home, so she has seen it up close. But since no one in our family has lived to be an octogenerian that we knew, it's my first up close look at the insidious disease of Alzheimer's. No, I think I would not want to know because there is no proven prevention or cure. I'm a neurotic worrier already, so it would be futile. lol V.

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  54. French Fancy, unfortunately, my religion forbids it, this time of year. ;^)

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  55. Willow, thanks for opening up this discussion. Family events have kept me away from the blogs for a couple of days.

    I must say, I'm amazed that the overwhelming majority of commenters say they would not want to know, or would not seek out the knowledge unless there was some pressing reason to do so. This goes directly against the basic cultural assumptions that seem to rule health care in the U.S. ... namely, it is our responsibility to know as much about our and our children's health as we can, and to DO as much as about it as we can, no matter what the cost. In fact, the issue of whether the costs might outweigh the benefits in any particular case is never even considered. In the medical and parenting literature that I've encountered, not spending as much time, money and effort as you can to make provisions against every possible health problem for you and your children is assumed to prove you a bad person.

    Should be obvious from the way I describe it that I have a problem with that philosophy. However, it is part of the air we breathe, and even if I dissent from it intellectually, it is so bred into me that I will surely feel guilty if some health problem happens to me or my kids that I "could have" prevented ... no matter how remote the "could have."

    I like Bill Stankus' comment. That is the lesson of the Greek tragedies like Oedipus: if fate is going to get you, it is going to get you, and your efforts to forestall your fate will only hasten it by some other route. There is some truth in that, but it's not the whole story. As a Christian I believe that God made us as beings who, though finite, can actually have a real, if limited, influence on the world around us.

    Also I have seen the bad effects of pure fatalism when overseas in a place where hospital personnel and even family members showed (what seemed to American eyes like) no apparent urgency about acting to save someone's life.

    Sorry to ramble on and on, but fortunately none of you have to read this comment because the post is already several days old ...
    :-)

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  56. PS
    I'll go on preaching to the now-empty room ...

    If we know we are going to get Alzheimer's, we have to face the possibility that our most secret thoughts might become public, might even be the only thing we can say any more.

    Quite the motivation to work on our thought life and fill it with good and beautiful things.

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  58. Jen, the room's not empty, I'm still here! Excellent points. This topic brings up lots of thought provoking questions. Thanks for suggesting it.

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  59. An alternative for the person concerned about their health, whether DNA, chemical, or virus laden, is to get an Reiki atunement to heal yourself. And perhaps enlighten yourself enough not to return for another learning experience.

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Inject a few raisins of conversation into the tasteless dough of existence.
― O. Henry (and me)