A few weeks ago I was listening to NPR Science Friday’s interview with Dr. James Watson, co-discoverer of DNA’s double-helical structure, and he mentioned that he had his genome sequenced but with the precondition that he didn’t want to know if he was predisposed to Alzheimer’s disease or not.
Today there was another report about a family who got their child’s DNA sequenced but again chose not to tell her (when she’s old enough to understand) what the implications for adult diseases were.
Why? Why would you rather not know?
The only thing I can think of is to stave off genetic discrimination, but IIRC, that’s already mostly prohibited by US law. If I could know that I’m at a 30% risk of Alzheimer’s rather than a 15% risk, damnit, I want to know. Can anyone here tell me why they feel differently?
If I had a 10% chance of getting Alzheimer’s, I’d know what to do. Let out a sigh of relief!
If I had a 90% chance of getting Alzheimers, I’d be thrown for a loop and I would be sad for a long time, but eventually (I hope), I’d be able to come up with some reasonable plan.
But if it turns out that I have a 40-60% chance, what do I do with that information? Freak out every time I lose my keys and then have a party whenever I find them?
I’d want to find out what my risks were, but within certain limits.
Wouldn’t that information be helpful though? I’m about to turn 60, and if I knew I had a real big chance to develop Alzheimer’s, I’d retire as soon I could afford to, and travel, see old friends, make new friends, view a lot of art, etc. on an accelerated schedule, and if I found I had a low chance, I’d be more conservative.
Well, I’d probably want to know myself, but I can understand not wanting to - my reasoning not to would be a variation of carpe diem of sorts:
Regardless of your genetic predispositions, there are only two end cases - either you’ll get some rotten disease or you won’t. If you do get it and you’ve expected it all your life, are you really more prepared to deal with it ? But if you don’t get it and you’ve worried all your life that you would, and led your life as if you would, then in the end you’ve given yourself a lot of heartache over what turned out to be nothing. But you had to wait until the end of your days to know it was nothing.
Summarized: “Why worry about things you can’t change ?”
Because a predisposition is not a given. If you don’t know your percentage of risk, you don’t waste time worrying about something that currently there is no 100% cure or preventive treatment for. We all live with the spectre of grave disease and disability hanging over our heads. And we’ve all seen people who lead perfectly healthy, fit lives taken down by diseases that some would claim to be preventable through behavioral changes, but still they die, or suffer. So it’s all a huge crapshoot anyhow. Being told your whole life, “ooh, you’re gonna get Alzheimer’s” would make you question and worry about every tiny episode of forgetfulness that every single solitary one of us has. And despite what they say NOW about discrimination, you know danged well that at some point some insurance company is going to require genetic testing just so they can exclude you from coverage.
My sister is getting tested soon to find out if her form of breast cancer is the genetically linked one or not. I don’t know yet whether I want to know her results. I’m already vigilant about mammograms and the like since both she and our mom developed it. I’m not sure there is much more I need to know in order to be watchful.
You may be concerned about your job, and discrimination at the workplace. Me, I’d be more concerned about my life and the social problems that would (and , in future generations, almost certainly will) arise.
Who’s going to want to marry you if on your first date you tell them that you’re likely to die at age 50?
I like my freedom to choose how I want to live.
(hijack ahead?)
In the future, maybe 200 or 300 years, it’s likely that our society will be unrecognizable due to genetics. There will be a huge leap in biological engineering that will create a new era …just like the leap in silicon engineering revolutionized our era.
Genetic testing will be so thorough and accurate that Brave New World will not be science fiction. Every baby born will be categorized and restricted to a certain kind of life, with no freedom to try anything that is not “in the genes”. [/hijack]
So --back to the OP—that’s why I don’t want to know what’s in my genes.
It also specifically excludes some very important issues. It is not illegal to discriminate on the basis of genetics when writing disability insurance policies for instance, or long term care policies. Getting health insurance isn’t going to help much if you know you’re going to need to pay for skilled nursing care for years and nobody will write a long term care insurance policy because you’re predisposed to dementia.
Predisposition is definitely a huge difference from certainty. My dad has a rare genetic disorder. We could tell from the preponderance in family history that it was an autosomal dominant mutation, and just this year we finished working with researchers to identify the gene and the mutation. So for the first time I had the opportunity to get tested. It’s a late onset disorder, but there’s no “predisposition” about it, there were 50/50 odds I had the mutation and if I did I’d develop all the symptoms starting in my late 40s.
I was tested and I’m fine, but I’ve had people tell me that even in my situation they *still *wouldn’t have wanted to know. Personally I think people would feel different if they were really in the position. Of course it would’ve been horribly depressing, but I would’ve planned a very different life with that information.
For many genetic conditions, there’s literally nothing you can do to treat or prevent it. We’re dealing with a similar issue with my daughters right now, and I’m in the position of not really being able to simply enjoy having a beautiful baby girl to play with and love. Instead I find myself constantly trying not to interpret every little thing as a possible symptom of bigger problems. Now, in my case, it makes sense, because early intervention can make a big difference, and it’s worth it if it improves her long-term prognosis, but if there were nothing we could do, having that knowledge would suck hugely.
The real depressing thing to me is knowing we’re going to die anyway. We all already have our own mortality to deal with. Having a better foreknowledge of the probable method and time seems like it would be liberating in terms of having the freedom to plan and live your own life as you like. I’m not a fan of the fatalists.
Do you have a specific case in mind? Fuzzy Dunlop does mention some insurance problems that I wasn’t aware of. But to me that is a problem with a social solution that needs to happen to make way for new technology.
First off, I don’t know the details of your situation and don’t mean to be presumptuous.
Secondly, if there was a chance that you or your partner could be tested for the probability of the disorder, would you have done that? Would that have changed your decision to have children? I realize that some disorders are random mutation and testing parents is pointless…
I ask because I have a friend who is a carrier of an X-linked disorder. Her sons are affected. Her daughter was tested and is a carrier, she had one grandson with the disorder who died in infancy. Her granddaughter is under 18 and has not been tested to see if she is a carrier and will make the decision herself when she comes of age. If it were me, I would want to know, as it would affect my decision to have children.
Consider the case of inherited diseases. My sister has Huntington’s Disease. If you have a parent with HD, you have a 50% chance of inheriting the mutation. If you inherit the mutation, you will develop HD at some point in your life.
Currently there is no cure. There’s no treatment, other than managing symptoms after the patient becomes symptomatic. There’s no real advantage to knowing ahead of time, other than being able to plan for the inevitable future. Of course, you’d get tested if you planned on having children of your own. Otherwise, would you want to know that your life has an early expiration date?
Of course, technology marches on, and things will no doubt change in the future. Technologies such as gene silencing show a lot of promise for HD and other inherited illnesses. When and if that, or similar technology, is perfected, I can’t imagine not wanting to know.
I think that many people hypothesizing how they feel about knowing a dark future they can’t meaningfully change might feel different if they really lived with that choice, especially if they cared for a parent with the disorder they might have.
It’s definitely a horrifying thing to face, but with time you come to accept it. You think about living for years with incredibly expensive needs. Health insurance never pays for long term care. If you need skilled nursing care it costs $7000+ per month. Eventually when all your assets are used up you’ll qualify for Medicaid, but it can be difficult or impossible to get into a decent facility.
Of course the prospect of spending the little time you have preparing to provide for yourself while you’re suffering until the end isn’t very appealing either.
When you weigh that against finding out for sure you don’t have that genetic mutation and can plan a normal life for yourself, there’s a pretty huge upside to finding out. But that’s just my personal life experience.
Evidently they type of breast cancer that got my SIL’s mom has a strong genetic component. SIL knew that, was vigilant with maintaining general health and exams almost to the point of obsession. When her timer finally went off Mr. Cancer pounced on her and ate her up like nobody’s business. Took her completely by surprise with the suddenness of onset and the ferocity of its progression–and she was prepared for the fight. She just barely made it long enough to see her daughter’s high school graduation. Her daughter got the gene test, just to make sure she inherited the curse. She had, and got herself a voluntary double mastectomy shortly after her 21st b-day. Sometimes it’s worth taking a look I guess.
Had I known my own mental issues had a significant genetic component I would never have made babies, and would probably have given in to my strong desire to eat them as infants. Now I have to watch them, especially my son, deal with it and it totally sucks.