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Genetic Testing: Can What You Don't Know Really Hurt You?

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372983 02: A civilian scientist working in the Broward County crime lab handles processed DNA extractions that were taken from blood samples of convicted criminals July 13, 2000 in Fort Lauderdale, FL. Since the DNA Identification Act of 1994 was passed the Federal Bureau of Investigation has established a national database of DNA taken from the blood samples of convicted criminals. The DNA data is used by law enforcement agencies in 22 states to help identify suspects who were previously unknown to investigators. In Florida, DNA blood samples are mandatory if one is convicted for the following offenses or attempted offenses: Car jacking, murder, sexual assault, lewd or indecent acts, aggravated battery, and home invasion. (Photo by Robert King/Newsmakers)

Neuroscientist James Fallon's mom Jenny said, "Jim, why don't you find out about your father's relatives? I think there were some cuckoos back there."

He took her up on the suggestion, he told NPR. A brain scan later, the man who had spent 20 years studying criminal minds learned that he -- alone among his immediate family -- had the brain of a person given to violent crime. A scan of his lineage revealed that a great-grandfather hanged for killing his mother. Also? Lizzie Borden, she of the 40 whacks of an axe that supposedly killed her parents? A distant cousin.

You know what they say: you learn something new every day. And sometimes it'll blow your mind.

Fallon goes on to say that he believes his relatively inactive orbital cortex -- a supposed sign of poor choices and aggressive tendencies -- was balanced out by a happy childhood. A history of abuse in the home is usually the trigger, he said, for people with similar brains who go on to hurt others in adulthood. It's a sign, anyway, that although genetic testing can tell you part of the story about your possibilities and challenges, there are other variables that scans and tests can't touch.

As a person with a congenital birth defect myself -- a cleft lip and palate -- I could have had genetic testing, I guess. I've just never seen the point, and not just because explanations like this make my head hurt. I haven't tried to conceive a child and even if I had and that child turned up with the same condition, it would have made absolutely no difference to me. The prospect would not have deterred me from getting pregnant, and ultrasounds would have likely shown me everything I needed to know to prepare emotionally and logistically. I do wonder sometimes why this happened to me, when there is no known history of clefts on either side of my family, but I came to terms with it long ago.

Plus, when you spend the first 12 years of your life going through one surgical procedure after another, it all kind of runs together, but that was years before companies like 23andme could sell me an over-the-counter genetics test and I could cross my fingers that they wouldn't send my result to the wrong people.

Others undergo genetic testing to inform themselves about possibilities and plan for the future. BlogHer Political Director Erin Kotecki-Vest went through it after watching many family members get cancer. She wanted to know what her chances were, and to be prepared as early as possible if need be.

Yes, I was nervous. The thought of finding out my likelihood of getting cancer over the course of my life was daunting. But I felt it was the most pro-active thing I could do in a sea of uncertainty. I also felt as though if I KNEW, I could do something about it. There are a lot of people who don't want to know. Who would prefer just finding out when they get cancer that they have cancer and deal with it then. I wanted to get it before it started. I wanted to be on top of it. I wanted to say I did everything I could.

"Why do you want to get tested? What difference would it make in your life? And what would you do differently as a result?"

In the years that I was a counselor working with families, these were the questions I always asked adult children of people with Alzheimer's Disease.

Opportunities for

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pomomama 5 pts

I'm in agreement for not testing just for the sake of testing.
However I have been thru Lynch Syndrome testing due to family history. Initially I didn't want any of it but with more research I realised that, if not for me, I needed to prepare my 5y old son for what might lie ahead.
For those not in the know, Lynch Syndrome vastly increases your risks of many cancers including bowel, uterine, ovarian and prostate. Most patients suffer bowel cancer, some at a very early age. Once identified as a carrier preventive medicine strategies are thorough (and not particularly pleasant). As a mature mum I wanted to be around long enough to guide my son thr what could be a medical nightmare and show him it could be done with dignity. But for me, the idea of knowing ahead of time was not that great.
I sobbed thru the genetic counselling and eventually decided to have it done, for him. My sister is negative, and I godammit am negative too! I cannot pass it on to my son.
The only thing that saddens me now is knowing my mum has to go thru this 'on her own' though I'm glad the awful gene mutation is now end of the line.

hope729 5 pts

Love the article! I definitely believe that what you don't know can hurt you & that couples planning on getting pregnant should look back through the branches of the family tree to see if genetic testing is in order.

http://www.myfertilitycharts.com/

Camp Kathy 5 pts

I have this conversation with myself and others quite often since we are part owners of Any Lab Test Now in Rockford IL where people can come to have the tests done. I have not done the biophysical test or even had the breast cancer screening done even though I am there all the time. I don't think I want to know.

We had genetic testing done after the loss of our 3rd pregnancy and the results just made me feel like a walking ticking time bomb when I got pregnant for the 4th time.

People tell us that they are grateful that we offer the service to them and maybe I will change my mind, but, right now, for me, ignorance is bliss.

http://blog.campkathy.com/

sreschke 5 pts

There are pro's and con's to genetic testing. Just like all situations there are dangers associated with "too much" information. My immediate family has undergone extensive genetic testing. My oldest child has several germline mutations that make him extremely susceptible to malignancies. Several years ago, a diagnosis meant more testing, the test results revealed a statistically grim future. However, it's been almost 5 years, none of the doom and gloom forecasts have come to pass. I am so grateful to know which mutations he has because it ENABLES and ENPOWERS us to use reasonable preventive measures. His situation is the same whether we are aware of his mutations or not, however we can be a bit more proactive in his health care since we have the information.

Sarah writes at www.dailywildflower.blogspot.com ( http://www.dailywildflower.blogspot.com/ )

lisanoel03 5 pts

I have chosen not to even look into testing for myself despite recently loosing my mom to breast cancer. i already know i'm at high risk, getting tested would really make a difference in my life. i don't think insurance companies will actually pay for such radical "preventatives" like double mastectomy based on genetic testing. I WILL however take aggressive treatment when/if it does happen. Until then I've already learned that EVERY SINGLE DAy is a precious gift and we really work hard to live as such.

JennaHatfield 12 pts

I now have breast cancer on both sides of my family. My mother is urging me to be tested.

And I can't.

I probably will someday. But right now, knowing that I can't magically change anything anyway, I'm just not ready.

Jenna Hatfield (@FireMom ( http://twitter.com/FireMom )), from Stop, Drop and Blog ( http://stopdropandblog.com ) and The Chronicles of Munchkin Land ( http://thechroniclesofmunchkinland.com ), is a freelance writer and newspaper photographer.

InDueTime 5 pts

This post makes me want to write a blog post.

Let's just say this (for now) I was taking my niece to a doctors appointment one day when a doctor noticed my ears and eyes and began asking me a few questions, after a short discussion and a tip to go Google something, I have potentionally found out, what we thought was "effects" from a mother with an eating disorder and a medication she took in the first 6 weeks of her pregnancy, may be a chromosome mess up.

I found this information out 2 years ago. I can not tell you what it feels like to have a light bulb go off after 24 years of walking around in this body.

I do have a chance of passing this along to my child and I am not comfortable with the risk. I do want to get our embryos tested when we do treatments in a few years because I wouldn't be okay if my child was born exactly like me (I have it mild--apparently) and if my child had it worse, I just..I wouldn't want this for them.

Melissa Ford 5 pts

If there's something preventative I can do, I would want testing. If it's just information for information's sake, I might not. We had genetic testing done and I'm glad we did because we used it to make decisions. On the other hand, I've opted not to do something like 23andme because I don't think the information gained by that would help me make decisions. It would simply be for curiosity, and I'm just not that curious about my genetic makeup.

Melissa writes Stirrup Queens ( http://stirrup-queens.com ) and Lost and Found ( http://lostandfoundandconnectionsabound.blogspot.c... ). Her book is Navigating the Land of If ( http://thelandofif.blogspot.com/ ).