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.

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.

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)

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

Appreciate your comments and sharing the secrets to staying young!

Merrill

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.

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!