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

7 years ago
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 genetic testing to determine the likelihood of getting Alzheimer's were very new at the time, and by no means conclusive.

Many times I found that, unlike Erin, they hadn't really thought this through. They just knew, like she says, that they wanted to know. They wanted to be able to predict the future a little better, and to prepare for it the best they could.

But the bottom line was that they could do that anyway. All the testing did was tell them if they had an increased chance, and false positives were entirely possible. There was no cure for Alzheimer's then and there isn't today. Mental agility and lifestyle choices such as healthy diet and exercise -- although linked in some ways to delayed onset of the disease -- were no sure prevention either. I watched families make their loved ones do word games and complicated aerobics routines in the hopes of delaying the progression and the only result was that everyone got frustrated.

And the thing is, people could arrange their powers of attorney and living wills, eat right, exercise, stay informed about advances in treatment, buy long-term care insurance anyway -- and live.

I don't know. Can you live with the uncertainty of the unknown or the maybe-certainty of test results? Sometimes it's a tough call.

Contributing Editor Catherine Connors of Her Bad Mother had testing done prior to her second pregnancy, and came to a similar conclusion.

I had extensive genetic testing done, before I had kids, because my nephew (Tanner) was diagnosed with Duchenne's Muscular Dystrophy, which is genetic on the maternal side -- if my sister carried the gene, I would also likely carry the gene; and if I carried the gene, there'd be a 1 in 2 chance that any boy I had would have DMD, and die from it. It was a gut-wrenching process that was meant to help us decide if we would ever have children.

I was trying to figure out whether to proceed with further genetic tests with Jasper, and my experience with the testing for DMD had left me feeling that I couldn't let such tests guide my decision-making, which obviously bore upon making a decision relevant to continuing a pregnancy ... It's one of those heavy things that I'll probably still be trying to sort out my feelings on until I die. WOULD I HAVE DONE ANYTHING DIFFERENTLY IF?

In a way, rejecting that kind of testing is a way of avoiding that question entirely. There are good and bad sides to that. But if I had to do it again, I wouldn't.

Erin, meanwhile, would get tested all over again.

I was lucky. My testing showed I did not have the gene that gave me a higher chance of cancer and I was negative. Relief did overcome me, but not for long. I may have a lower chance of getting cancer, but it's still a chance. And I'm glad I did everything I could to give myself all the information possible.

How much is too much? How much make sense for us to know and make sense of? The University of California at Berkeley is offering genetic tests to this year's freshman class to determine -- get this -- the ability to absorb folic acid, tolerate lactose and metabolize alcohol. It's part of a "common intellectual experience" to explore the theme of personalized medicine that has caused quite the uproar.

I don't know about you, but I got a t-shirt and a planner when I started college.

James Fallon wasn't having genetic tests done to help determine his future or to make any decisions about his life, as many others do who seriously pursue genetic testing. But unexpected results like his show the power incredible reach of science today -- and makes me wonder what I could find out that I may or really may not want to know.

Would I be a woman who would choose to have breasts removed rather than wait to see if they'll become cancerous? Would I make any other, far less serious decisions? Would I make sure I took the time to see a reputable genetics counselor, rather than relying on some instructions in a box from the drug store?

And I can only hope that whatever anyone's reasons are for delving deeper into their genetic makeup -- and that of their partners and family, when it comes to that -- that they choose wisely for themselves and others in this very personal, admittedly fascinating process.

Laurie White writes at LaurieWrites. Her photos are on Flickr.

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