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Are Home Genome Tests a Step Away from Eugenics?

By Annalee Newitz, AlterNet. Posted November 29, 2007.


New companies claim to reveal the secrets of your DNA, but will the information cause more harm than good?

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A company called 23andme.com launched last week and got wads of media attention for being the first user-friendly Web site devoted to home genomics tests and analysis. For just $1,000, the company will take a swab of your cheek, sequence your genome, and tell you a bunch of things about how you fit into the Family of Humanity. They'll also allegedly give you nifty details about yourself, such as whether you have athletic abilities or a propensity for disease.

And 23andme is just the beginning. Another company called DeCode offers a similar service called DeCodeMe, and more are sure to follow. People are desperate to understand themselves, and so they turn to genetics as if it were a self-help manual instead of a still poorly understood science. While there are many theories about how genetic expression works on our personalities and health, there are few solid facts. Some tests, such as those for various kinds of developmental disabilities, have provable results. But many genetic tests, like those 23andme claim can reveal "athletic ability" are the biotech version of snake oil.

The question I keep asking about home genomics kits is whether they're any worse than, say, parts of the self-help industry. Both promise to fix people by making vague pronouncements based on a little science mixed with a lot of rank speculation. Both do help people figure themselves out some of the time. And both are often quite costly -- therapy can go for hundreds of dollars an hour, and so can self-help classes.

I'm wondering, essentially, if there's something exploitative about the services sold by 23andme. Probably not -- or no more so than the chocolate sold by Godiva, which is also shockingly expensive and basically useless. If people want to pony up the cash to have a little fun, why not?

But I don't think it is just a little fun, like chocolate or "find the inner you" classes are. What I see when I look at a site like 23andme is nothing less than the future of eugenics. I don't mean the scary capital-E eugenics of the 1930s that involved killing Jews and sterilizing "loose women."

I mean wild-type eugenics, the kind of genetic engineering that happens in nature without any dictatorial intervention. It's the sort of eugenics that results when people of the same races and classes tend to marry each other. It's the genetic engineering that results when men can choose their mates but women can't.

23andme and Web sites of its ilk are just one step away from becoming social networks based on genetics, like Facebook for people who want to compare genes instead of beer bongs. Currently that's not what 23andme is trying to be, though they do offer users the chance to compare their genomes with those of the general population.

But you can bet that once these companies amass tons of genetic data, they're going to want to do something with it. After they sell it to insurance companies -- who will use the information to charge higher rates to people with "bad" genes -- they'll sell it back to users in the form of social networks.

Or the users themselves will post their data for all to see, the same way they already cluelessly post pictures of themselves passed out naked on MySpace. And out of that data will arise the first dating service based on genome compatibility. And what is genome compatibility but eugenics?

While newspaper stories about the new personalized genomics services trumpet the arrival of the future, I see nothing but the past. This isn't science for the masses; it's not enlightenment. It's just the same old crap dressed up in the language of modern biology and tricked out with a zoomy Javascript interface. And I do think it's worse than self-help, which is sometimes good for you. It's worse than Godiva chocolate, which is at least tasty. Home genome kits, at this point in time, are likely to confuse people at best and confirm their prejudices at worst.

I'm not saying people shouldn't buy these kits, or that they won't be useful one day, when we understand our genomes better. I'm just saying we shouldn't use them to understand our places in society. Certainly we shouldn't use them to find genetically compatible friends. But I'm pretty sure we will.

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See more stories tagged with: dna, genomes, dna mapping, eugenics, 23andme.com

Annalee Newitz (annalee@techsploitation.com) is a surly media nerd who thinks your genome isn't worthy of hers.

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bendinriver
Posted by: bendinriver on Nov 29, 2007 5:31 PM   
Current rating: 2    [1 = poor; 5 = excellent]
Like most of mans' inventions and scientific discoveries can be used to advance man or destroy him.

Your article was right on target, if you can make a Buck regardless of the possible consequences our Capitalistic system calls for making that dollar priority.

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The doctor's partner
Posted by: wolfgangmo75 on Nov 30, 2007 3:35 AM   
Current rating: 4    [1 = poor; 5 = excellent]
Hi,

My wife is a physician and I am a part-time partner in the practice. You have articulated a MAJOR problem with genetic tests. Yes - we offer them, but we strongly urge our patients to pay out of pocket for them and to NEVER let their insurance foot the bill, because insurance companies share that information with each other on a national database.

And once that information is on that database you and your family will be denied coverage or denied treatment and will face higher premiums. You may be denied any coverage or be dropped.

This is why if you get genetic testing you should get a doc to order it for you and you should pay out of pocket for it. A reputable doc will have no problem keeping said test out of your file at your request. This keeps you in control. Also they will have ordered the lab from one of the reputable, physician only labs like Genomics/Great Smokies which hold any results under federal HIPPA regulations, meaning that only the patient can access them and they are never sold.

Here is a nightmare scenario for you. Let's say as a parent you go to one of these genetics-in-a-box companies and they, not having a doctor/patient relationship with you, are free to sell your info. The insurance companies gets your child's info and then they deny your child treatment some years later based on the reprehensible justification called "pre-existing condition," which is insurance speak for "we ain't gonna cover your ass 'cause we don't wanna, so **** you and we hope you die before you can sue us."

If you don't think this isn't already happening I have a republican candidate for you to vote for.

Also, $1000 for a genetic test is outrageously high. We don't charge more than 3 or 4 hundred for any of our tests.

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» RE: The doctor's partner Posted by: david_m_silverman
Gattaca
Posted by: Axiom69 on Nov 30, 2007 6:15 AM   
Current rating: 2    [1 = poor; 5 = excellent]
Interesting article. I was unaware that there were web sites offering this service. If you want to see how this could go terribly wrong see the movie Gattaca.

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» RE: Gattaca Posted by: Mac Geek
Making it easy for Big Brother
Posted by: psyche on Nov 30, 2007 9:14 AM   
Current rating: Not yet rated    [1 = poor; 5 = excellent]
This is a very dangerous "product", as the writer points out. Americans are rushing to give the government and big business access to their private lives. When will we wake up? Would you want your doctor to post your medical file on the Internet? Buyer beware!

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Complex Issue
Posted by: MargoM on Nov 30, 2007 9:41 AM   
Current rating: 5    [1 = poor; 5 = excellent]
I have a mixed reaction to these genetic mapping services.

On one hand, I have fibromyalgia, for example, and there is some thought that genetics contribute to this condition. I would like to understand that and make my genetic map available to researchers studying this kind of thing.

On the other hand, I think this can also be a case where a little knowledge can be dangerous. I mean, people using these services, laypeople like myself, won't really understand the results and would have to take by faith the interpretations given them, even though I don't think science really knows all that much yet about our genes. So it's quite possible that the report back on the analysis of someone's genes might in the future be found to be erroneous and the person receiving this report about himself or herself might make perhaps significant life changes based on the report.

For example, I know that on my mom's side there are a lot of people who have old age diabetes. So it would be quite possible that the report on myself would say that I have some gene(s) or other that point in this direction for myself too. So I might get all panicky about that and do everything under the sun to avoid this sort of prophecy coming true. Well, I think I am pretty good at exercising and keeping my weight down, but I do eat more sweets than I should. But I could really go overboard, if I was that type of person to react like that. And then a few years down the road some scientist finds that my report was wrong and they interpreted my genes wrongly.

It's possible that the type of people wanting to have their genes analyzed are Type A people, perfectionists, and really would take it all as gospel truth and plan their life accordingly. I could see that happening.

I think that doctors dealing with patients who have had such analysis done could really have some problems too. Doctors can't all be specialists in genetic code mapping, so how would doctors deal with patients presenting such a report to them? I'm sure in some areas where genetic heritage is a major issue, like some birth defects and muscular dystrophy, treating or diagnosing doctors would know what to do with relevant genetic analysis and should be up on the relevant genetic issues. But probably most health issues are more esoteric as far as genetic readings are concerned, and practitioner doctors aren't up on all the genetic issues related to every form of condition or illness.

I'm not sure we're ready for these kinds of analysese, but the companies offering these services are in it for the money, and some people want to have it done and are willing and able to pay for it.

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Testing for your children's genetic health
Posted by: IntlDad on Nov 30, 2007 1:46 PM   
Current rating: Not yet rated    [1 = poor; 5 = excellent]
I live in a state that includes testing at birth for Biotinidase Deficiency. My wife and I, as we discovered, each have the rare recessive gene that can carry this condition. One of our children was caught by this test and has been under treatment. Untreated babies with profound Biotinidase Deficiency often die from it, and since it’s a metabolic disorder, the cause of death cannot usually be identified. If we lived in a state that didn’t test for Biotinidase Deficiency, (and only about half do) we would have lost our baby and we wouldn’t know why. I doubt there’s a chance that my wife and I would have tested ourselves for an obscure recessive gene, but if there’s even one chance in a thousand that we had a test could have saved the life of a baby.

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Genographic Project
Posted by: TheNamelessCity on Nov 30, 2007 1:50 PM   
Current rating: Not yet rated    [1 = poor; 5 = excellent]
I had my Y chromosome's history mapped by National Geographic's Genographic Project (next time gonna do the X). Cheek swab. Found out that I am descended from the Eurasian Adam who lived in East Africa between 35,000 and 60,000 years ago, and that I am a member of haplogroup R1b:


"The genetic markers that define your ancestral history reach back roughly 60,000 years to the first common marker of all non-African men, M168, and follow your lineage to present day, ending with M343, the defining marker of haplogroup R1b......Today, roughly 70 percent of the men in southern England belong to haplogroup R1b. In parts of Spain and Ireland, that number exceeds 90 percent."


Comes with a nifty map showing my ancestors' migratory route from Africa through the Middle East into Europe. I am descended from Cro-Magnon! WOOHOOO. The Project claims that the samples sent in are anonymous and not kept on file, and are discarded after testing. Hmmm wonder if that's true now....

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A new "Mensa" basis
Posted by: talkville on Nov 30, 2007 10:26 PM   
Current rating: Not yet rated    [1 = poor; 5 = excellent]
Another great and pertinent article by this author!.

The great potential for "auto-eugenism" and for yet another self-proclaimed group of "exclusives" under the meta-physical identification of Biology with Destiny.

One can think of each individual as a singularity in Space-Time. These new 'technologies of power' and their promise passing on wholes or parts of such singularity to offspring is indeed the province theology and not science.

So now we must expect the imminent arrival of a new "Bio-Mensa Society" to lord over all of us their possession of the elusive and oh-so-rare GENUINE Vanity Gene!. Seems not like, but a modification of, that capital "E" Eugenics of the 30's to me!

"Can't hurry love" the song sang; well, can't hurry evolution or darwinisms either. Best to go way slow on this one!

Once again, thanks for keeping the 'teeny', 'out-of-the-limelite' issues in the daylight! -- Meanwhile, I'm still waiting to hear about some medical-examiner to obtain a good hefty sample of 'intelligence' or 'mind' or 'tendency' from a human body so it can be REALLY quantified, measured and probed as well as commodified! No doubt then all these things will be available at Wal-Mart and other outlets and for much less than $1000!

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Just a Note
Posted by: throck on Nov 30, 2007 11:12 PM   
Current rating: 5    [1 = poor; 5 = excellent]
When we choose a reproductive partner we are using Eugenics. Nothing other than purely random mating would be devoid of intent. Selective breeding is our future and should be given some thought. The real question is really in who is doing the choosing. Please choose well.

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» RE: Just a Note Posted by: talkville
Eugenics is a good thing
Posted by: Bobsays on Dec 1, 2007 8:01 AM   
Current rating: 1    [1 = poor; 5 = excellent]
While humanitarians will have a freaker, I hate to say this: but countries that practice a bit of eugenics also have healthier, better looking people.

Scandinavia practiced eugenics up to the 1970s, and any visit there will show you a very healthy, good looking population.

Unfortuntately, when you go to countries that don't do it, you are in the ugly house.

In the future, I think people will become less accepting of ugly, obese people and their myriad of excuses (most of which are lazy, lifestyle ones) and will see abortion as a necessary clinical tool. And it may not come from government, but people will practice it anyway, either through medical interventions of by, for example, moving to a neighbourhood with better looking, smarter people. I see it all the time.

If you value the planet and its resources, you will not waste them on large populations who can't do anymore than consume.

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» RE: ugenics is a good thing Posted by: talkville
» Baby and bath water Posted by: Bobsays
» RE: Baby and bath water Posted by: talkville
» Geez, what a bigot! Or are you just trolling? Posted by: Camilla Cracchiolo
Why is eugenics bad if it doesn't involve genocide or involuntary sterilization?
Posted by: medstudgeek on Dec 1, 2007 11:46 AM   
Current rating: Not yet rated    [1 = poor; 5 = excellent]
No, really. We all agree the Holocaust was bad. But the Holocaust involved mass murder. Most people think mass murder is bad. Involuntary sterilization overrides people's right to their body. Most liberals at least think this is bad (though conservatives like to ban abortion). So...seeing as you're practicing eugenics if you look for an attractive, intelligent, or charming member of the opposite sex, what's wrong with trying to improve the genetics of your offspring, or the human race in general? Do we really need the Tay-Sachs gene around?

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Ah, eugenics. Fun with "hot button" words.
Posted by: richenza on Dec 17, 2007 11:55 AM   
Current rating: Not yet rated    [1 = poor; 5 = excellent]
The problem is not so much that people will try to use this tech to improve the gene pool. The problem is that people aren't always right in their beliefs about what selections make an improved population.

Somewhere in these comments is a person who believes attractiveness is the trait we should be angling for. Of course, since what we deem attractive varies widely based upon gender, I wish this person luck. Picture this: Instead of breeding a pale, skinny, hairless woman with poofy lips (fashion model), you get a pale, skinny, hairless man with poofy lips. You see my point.

The tendency of people to reproduce within their own racial category is what gave us Tay Sachs and Factor 11 Haemophilia (my husband's disease) in the first place. That said, why should my husband and I not do some genetic screening to try to avoid that disease's negative trait in our children?

Of course, we're actually seeing a real doctor who will explain the results and risks to us, rather than trying to figure it out using the high-tech equivalent of a cereal box mood/decoder ring. Some things are good to do yourself using a kit - fixing your plumbing or changing a tire. Understanding the complexities of, say, codominant gene relationships, not so much.

Interestingly, our insurance is refusing to pay for this testing. Rather than pay to prevent a potentially lethal disease, they would rather pay the medical bills for the rest of the sickly child's life. (In MA it is illegal to refuse care on the basis of a pre-existing condition.) Ostensibly, thier refusal is to prevent us from engaing in "eugenics".

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