Bad News–Do You Want To Know?
A few weeks ago I was reading the Sunday Dallas Morning News Parade section and they had a very interesting question. The article was about a new DNA test that can tell if you carry the genetic risk factor for Alzheimer’s disease. When the results come back you can’t do MUCH about it at all. There is NO treatment that currently exists to prevent or delay progression of the disease.
The question that I want to ask each of you is would you take the Alzheimer’s Test?
For me — I would and here are some of the reasons why.
- I feel like information is like gold–the more you have the better off you are. What this really means to me is if I know I had some type of disease I could make sure I have things in a little better order for the future
- If I knew it would give me an opportunity to spend time with the people that really matter
- If I knew, it would give me a better opportunity to try and see places I always wanted to visit or do things I always wanted to do–like a bucket list!
- I would want to know because I believe in the medical profession and just because they don’t have a cure now doesn’t mean they won’t have one in a few months.
For me I think you owe it to yourself, family and friends to always know what is going on health-wise so yes, I would take the test.
- What about you?
- If you say yes what are your reasons?
- If you say no what are you reasons?
I look forward to reading your comments.
July 18th, 2008 at 8:31 am
I’m like Don Corleone…I like to know bad news ASAP.
Merrill…all 4 of the reasons you listed would apply to me also. Plus, my son will be going to med school in a year so I could get him to start working on a cure.
July 18th, 2008 at 10:50 am
I have a simple answer. Live each day to its fullest, because there are no guarantees that tomorrow will ever come. Have a great weekend!
July 18th, 2008 at 11:17 am
If the test they do is only an indicator that I “might” have something, sometime in the future, then no thanks. I’ll just try and do as Rich suggests and live each day to its fullest. I got enough things to worry about in the here and now without starting to worry about all the “what ifs” in the world.
July 20th, 2008 at 9:20 am
My answer can be found in an old Twilight Zone episode called “Nick of Time”. William Shatner and his new bride stop at a diner in a small town. The diner has a machine that accurately predicts the future for a penny. Shatner starts to become obsessed with the machine and keeps going back, much to the frustration of his new bride, to feed the machine to find out what is going to happen in his life. At the end of the episode, they notice an old couple sitting down in front of the machine with a large stack of pennies and realize that the machine has come to rule their lives. Rod Serling’s parting narration (courtesy of Wikipedia):
“Counterbalance in the little town of Ridgeview, Ohio. Two people permanently enslaved by the tyranny of fear and superstition, facing the future with a kind of helpless dread. Two others facing the future with confidence, having escaped one of the darker places of the Twilight Zone.”
So that’s why like Rich, I don’t take the test. In the first place, I saw no signs of Alzheimer’s in my parents or grandparents, so it’s not as much of a concern for me. The burden of knowing I might get a disease that I can’t control is too much. If medicine finds a cure for Alzheimer’s, I’m there. I’ll take the test and look to pro-actively prevent it, but otherwise, I’ll live each day as it comes and take the chance I don’t have it.
Submitted for you approval from the Twilight Zone (in that special area they call the Red Sox Nation Sector).
July 21st, 2008 at 11:44 am
I agree with Rick Johnson, “Live each day to its fullest, because there are no guarantees that tomorrow will ever come.” Why wait until you know that you are sick to do all of the things that you enjoy? Spend time with the people that count, let it be friends and family. Get out there and see the world and experience all of the great things it has to offer. Stay active and enjoy every minute.
I do not normally forward on quotes like the one below but I really like this one…..Secrets to staying YOUNG
1. Throw out none essential numbers. This includes age, weight and height.
Let the doctors worry about them. That is why you pay them.
2. Keep only cheerful friends. The grouches pull you down. (Keep this In mind if you are one of those grouches;)
3. Keep learning. Learn more about the computer, crafts, gardening, whatever. Never let the brain get idle. ‘An idle mind is the devil’s workshop.’ And the devil’s name is Alzheimer’s!
4. Enjoy the simple things.
5. Laugh often, long and loud. Laugh until you gasp for breath. And if you have a friend who makes you laugh, spend lots and lots of time with HIM/HER.
6. The tears happen. Endure, grieve, and move on. The only person who is with you your entire life, is yourself. LIVE while you are alive.
7. Surround yourself with what you love whether it’s family, pets, keepsakes, music, plants, hobbies, whatever. Your home is your refuge.
8. Cherish your health.. If it is good, preserve it. If it is unstable, improve it. If it is beyond what you can improve, get help.
9. Don’t take guilt trips. Take a trip to the mall, even to the next county, to a foreign country, but NOT to where the guilt is.
10. Tell the people you love that you love them, at every opportunity.
July 21st, 2008 at 11:48 am
As to numbers 1, 2 and 3, shouldn’t we really be thinking about life this way in any case, alzheimer test or not? Each day is a blessing and we can’t take for granted we’ll be here tomorrow.
Of course I do though. If only it were easier to really apply it and live life like every day was your last……….
July 21st, 2008 at 11:50 am
I think if there were some history of it in my family, then I suppose I would want to know. However, I decided a long time ago that I would try and live each day in a way where I could get the most out of it - both professionally and personally. Specifically with regards to the points 1, 2 &3 that you made, I try and do these anyway, because I think these are important in and of themselves, and should not simply be in contemplation of impending doom.
Not sure if I have the same faith in the medical profession as you (point 4), although I am grateful that strides are being made everyday for a variety of illnesses, disease, and even elective stuff that simply can improve one’s QOL.
July 21st, 2008 at 11:55 am
Why wait until you think you’re on a short leash to lead the life you’d enjoy?
July 21st, 2008 at 11:56 am
Sorry - I didn’t answer the original question! If I can’t do anything about the bad news, I’ll take the surprise.
July 21st, 2008 at 12:03 pm
I would want to know — my grandmother passed away from this four years ago. There are some medicines that can slow the process — If i have it, then I would want to know everything about the disease, the medicines out today and what to expect. I would also like to pick the home I would go to — how much money would be needed and to set-up trusts for my investments early.
July 21st, 2008 at 12:30 pm
Following Merrill’s reasoning we should all be tested for every disease known to man for which there is no known cure.
Gee I might have rickets! Is there a cure for rickets? Like Bob (and it’’s tough to agree with a Soxian - great post there Bob!) I don’t want to live in fear - especially of something that I would be powerless to fix or change.
Here’s another Twilight Zone reference- “Nothing in the Dark” 1962- props to IMBD.com)
Gladys Cooper plays a seemingly crazy and scared old lady who refuses to allow anyone in her basement apartment. You see, she believes that the Angel of Death is stalking her and if she never lets anyone inside, then she’ll live forever. Throughout the episode, various people try to get her to open the door but with no success. Only later, when a young policeman (Robert Redford) is shot does she struggle between her fears and her desire to aid this poor dying man. And of course, he is the Angel of Death.
The key phrase from that excerpt: “She never lets anyone inside…” - so sure, she could live forever, but what is the QUALITY of her life?
So Merrill, all those things you would do if you knew - go do them!
July 21st, 2008 at 12:41 pm
Sure, I would take it. Because if I did not have it, then I would feel relieved. If I did, then I would likely forget about the test results anyway.
Seriously, my mother used to joke about how she would not mind becoming “senile” (this was the PC term back in the 60s) because she figured that she would be the only one who would not know.
She is in her 80s now and had a stroke three years ago. She does not have Alzheimer’s but she has a serious aphasia which includes some memory and communication problems. She has her good days which we all treasure, but she is aware of her loss and that is very difficult.
I would definitely want to take the test because although there is not a cure today, there are things that can be done to alleviate and fend off some of the symptoms. It is also helpful to understand what is happening.
July 21st, 2008 at 2:00 pm
Kim,
Appreciate your comments and sharing the secrets to staying young!
Merrill
July 21st, 2008 at 2:05 pm
Jeremy,
Good question - I think people should try and accomplish and experience the things they want to before it is too late. There is never a perfect time to get married, go on vacation, have children, spend X amount of dollars. My hope is that I do the experience the things that make me happy for a very, very long time. I do believe you need a balance of living for today and planning for the future. Too many people that I know put too many things in the planning for the future bucket.
Merrill
July 21st, 2008 at 2:21 pm
(Soapbox warning!) I start with the very conscious premise that I’d like to lead a happy life, and then try like the dickens to execute against that. Of course I can’t always get what I want, but if I try sometimes, I just might find (sorry, getting carried away), but if I look at how I can make each activity / responsibility as good as it can be, then I’m more likely to have greater happiness overall.
Both of my parents died from Alzheimer’s. I’m probably a marked man. And even though my career has been based on planning and organizing, I don’t want to get caught up in worrying about tomorrow. I’ll try to take great care of myself as long as I’m able, and hopefully in ways I enjoy. That’s all I can do. (I won’t now start with The Cars.)
(End of soapbox)
July 21st, 2008 at 2:30 pm
I would not take the test. I see much more downside than upside. Merrill, your points are valid, but can be managed under Rick’s “live life” approach.
The clincher for me is the thought of how much pain you could feel if the wrong people/companies got a hold of your results.
August 1st, 2008 at 10:54 am
Interesting article that I thought zi would share:
07.30.2008 2:38 pm
Pull down your genes for health and ancestry testing
By Harry Jackson Jr.
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Let’s throw some ice water on the flaming fad of getting DNA tests for ancestry and health. DNA testing has been around for a couple of decades. It’s most often used to find markers and risks of diseases and tendencies passed through families, paternity, investigating felonies and adding spice to police TV dramas.
But recently, kicked off by Oprah Winfrey and Harvard professor Henry Louis Gates , DNA testing is being used to trace ancestral roots. Frankly, it’s exciting, especially among African Americans because the African sides of their genealogy often stop rudely at the files of some lazy slave plantation where records weren’t so important or were indecipherably cryptic. So it’s uplifting to find a link to a region and family tree in Africa.
But before you drop your $100 to $500 fee, give that some thought. The ease of genetic testing has become a house-call business where companies such as 23ANDme or deCODEme will read your genetic information for everything from susceptibility to diseases to likelihood that you’re related to someone.
But how private is this information? In May President Bush signed into law a prohibition against using genetic information for discrimination. And HIPAA (Health Insurance Portability Accountability Act of 1996) is necessarily Draconian in it’s prohibition of sharing private medical information without the consent of the patient. Still, warns the Council of Responsible Genetics, if you look closely at the laws passed nationally and state-to-state, you’ll find they pertain primarily to health and government agencies. Regulations are at best murky and at worst non-existent or unenforcible for direct-to-consumer companies.
Indeed, a close look at the privacy statement for one service, FamilyTreeDNA, speaks quite honorably about how it accepts responsibility for the protection of its database of information. But only a lawyer knows if that speaks to the snapshot of information that could find its way to a prospective employer, insurance company, mortgage company or other facility that would profit or lose because of your health picture.
So should you trust the trendy, shop-at-home, do-it-yourself genetic testing kits and services? As the fad gets popular, will the standards decline — as with everything else that has gone from honorable research to pop culture?
A study recently released by Cogent Research says 91 percent of Americans “… say they would have a genetic test for at least one disease condition and most say they would do so regardless of their doctors’ opinions or input.” Also, the research says, 55 percent would increase checkups if they learned of a trait for a disorder and 13 percent would opt for preventative surgery. And they consider the consumer, at-home tests an option.
Still, despite the official privacy firewalls, who has access to what could be an unregulated sector of genetic testing for fun.
I read up on this as I considered looking for my roots with a gaze into my bloodstream. What I found was that modern technology continues to outrun our ability to keep it under control. I have no doubt that the major DNA direct-to-consumer testing labs are honest and protective of our information. But until there are some guarantees that there’s no financial incentive to sell information like companies sell mailing lists, or that there’s no legal loophole into direct-to-consumer information that doesn’t exist into hospital or insurance company information, I’m going to talk to my doctor. My ancestors will be there when I find a solution.