Just a Little Scared of Genetic Testing

Just a Little Scared of Genetic Testing

by Dr. Hsien-Hsien Lei
Posted September 26, 2007 in DNA Testing, Polls About DNA

doctor & patient 22Nobody likes going to the doctor. (And if you do, I want to know why!) It’s inconvenient, time consuming, potentially expensive, and downright scary. You may think you’re going in for a routine check-up only to be told that you have a health condition that needs regular medication, like a partially clogged artery that requires statins. Worse still, what if the doctor proclaims you only have 8500 days until you’re dead?

So I found it curious when Navigenics* co-founder and chief science officer Dietrich Stephan made the following comment in a Bio-IT World interview about people’s reactions to being genotyped:

No one who’s taken it is frightened or scared when they get their results back. It’s all probabilistic — just like a cholesterol test. People have an intuitive [understanding of] testing and they’re not scared.

It’s one thing to be tested for a specific genetic mutation because you’re at high risk due to family history or other clinical indicators. It’s another thing to get a whole genome scan to highlight areas that may or may not cause you problems in the future depending on your lifestyle, environmental exposures, and level of impact conferred by the gene. Reminds me of what some relatives have told me in the past:

You think you’re healthy when you go see the doctor. No symptoms. Nothing. Then they do all those tests and find out there’s something wrong with you. And the next thing you know, you’re dead or dying!

The big hurdle to whole genome sequencing may not be the technology itself. Companies that focus on direct-to-consumer medical genetic testing, such as Navigenics, DNA Direct, and Myriad (see previous post about advertising for the BRACAnalysis genetic test), must also think about how to appropriately market their services and convince consumers that there is truly nothing to fear from having more genetic information.

I confess that I’m a little scared to know more about my DNA. Tell me I’m not alone. Are you scared too? Take the poll below!


Update: A comment left by InsaneDisabled in response to Esther Dyson’s piece about the Health 2.0 conference seems to agree with me:

Americans don’t want to know everything about their health. We treat our bodies like we treat our cars. We don’t need to know what’s under the hood. That’s the mechanic’s job.

*Disclosure: I work for DNA Direct, which occupies the same space as Navigenics.

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Comment by StevenMurphy MD Subscribed to comments via email

Trust me Hsien,
I am all too aware of this fear. We are trying to get my aunt tested for BRCA gene mutations. Not so much for her, but for our WHOLE family. Worse yet, she already knows that she had bilateral breast CA. Now that is Fear at its best.

If you can’t convince your aunt, Steve, nobody can! Good luck.


[...] September 27th Eye on DNA notes why some, or many, have fears or at least second thoughts, about having a whole genome scan [...]

Comment by KathyF Subscribed to comments via email

Hmmm… I was surprised to find that most people don’t want to be tested for HD. I absolutely had to know.

BTW, we just found out today that my aunt has it too. She learned yesterday, on the 8th anniversary of my learning that I tested negative. I was hoping it would be an auspicious day, but no such luck.

What devastating news, Kathy. :(

Comment by NA Subscribed to comments via email

Testing for HD is different when compared for testing for breast cancer. Some diseases hold more stigma then others. This is why people need to see a genetics specialist before undergoing genetic testing….but there are not enough genetic specialists to take on such a load of patients.

Genetic testing means different things to different people depending on many factors including their level of understanding, family history, culture, etc. For Kathy, HD testing is probably equivalent to breast cancer genetic testing but for others, the thought of getting tested for either condition inspires a tremendous amount of fear.


[...] Which category do you belong to? [...]


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[...] Lei Posted November 2, 2009 in DNA Testing A little over two years ago, I confessed that I was “just a little scared of genetic test.” I have two young children and almost every day I see traits in them that I’m pretty sure they [...]


[...] little over two years ago, I confessed that I was “just a little scared of genetic testing.” I have two young children and almost every day I see traits in them that I’m pretty sure they [...]


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