DNA Testing Can Ruin Your Life Forever

DNA Testing Can Ruin Your Life Forever

by Dr. Hsien-Hsien Lei
Posted March 11, 2008 in DNA Testing

No, those aren’t my words in the title. GP Dr. Ann Robinson is the one (but not the only one) calling at-home DNA testing useless at best, ruinous at worst:

The availability of DNA testing is even more terrifying. Last year two online services, deCODEme and 23andMe, started offering DNA analysis and calculating your risk of developing 20 diseases, including Alzheimer’s. For a mere £500, you can ruin your life forever.

<snip>

If you find out you’ve an increased risk of diabetes and heart diseases, the advice you’d be given is exactly the same as if you didn’t have an increased risk: eat well, exercise, don’t smoke, don’t get too fat, have a test if you get symptoms.

The charitable trust Sense About Science has also jumped into the fray with their new pamphlet – Making Sense of Testing: A guide to why scans and health tests for well people aren’t always a good idea. (via Medical News Today)

…acting on the knowledge of a single (or even a few) gene variants is similar to betting all your money on a poker hand when you’ve only seen one care. You don’t know what hand genetic factors has dealt you, nor what effect your environment may have, and here, instead of 5 cards, there are over 20,000 genes and many thousands of environmental factors! And the effect of one gene may be cancelled out by the effect of lifestyle, family history of by the presence of other, protective genes. Many of us carry faulty genes without them ever causing disease. There is promising research into genetic understanding of disease, but the association between one gene and a particular disease doesn’t automatically make useful tests.

In the March 2008 issue of The American Journal of Human Genetics, Janssens et al. examine seven companies that offer predictive genetic testing using multiple markers – Genelex, Genovations, Genosolutions, Integrative Genomics, Salugen, Sciona and Suracell. (via Yann Klimentidis) They conclude:

There is insufficient scientific evidence to conclude that genomic profiles are useful in measuring genetic risk for common diseases or in developing personalized diet and lifestyle recommendations for disease prevention.

And one more voice of caution from the Royal College of Pathologists and other scientific organisations in the UK who told MPs today that all DIY testing companies, including those offering genetic testing, should make their product’s efficacy publicly available. I don’t think anyone would disagree with that!

transparent headTransparency is critical. Brian Fling of Blue Flavor explains how companies of all types can “embrace transparency“:

  1. Never tell a lie
  2. Share your ethics
  3. Expose the truth
  4. Do no harm
  5. Listen
  6. Be iterative
  7. Accept responsibility

Do not trust any genetic testing company that does not make it clear what genetic variants they are analyzing. Never let anyone take your DNA unless they are clear about what they plan to do with it, what information they will give you from the analysis, and what they’ll do with the DNA after all the testing is complete. You are the consumer. You have the right to choose and the right to say no.

(18 comments)


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18 Comments

Comment by jhay

Transparency is the key.

Besides, can we blame people if they are curious about the their DNA test results? Curiosity may kill the cat, but that’s not the purpose of tests is it not? :D

jhay, No! The purposes of genetic tests is not to kill the cat!

 
 
Comment by NA

One may not want to trust the results of a genetic test if the person telling you (Gor forbid the results are sent to you via an email or mail with no discussion with a genetic counselor or clinical geneticist) is not trained in the area of genetics. The genetic counseling programs should admit about 2 or 3 more students (for all of the programs) so there are more genetic counselors found in medicine. Ideally, any department that does genetic testing should have a genetic counselor on staff.

NA, It certainly helps to have access to genetic counselors or at least good customer service!

 
 
Comment by Nathaniel

I could see it being useful if you wanted to ensure that you and your spouse didn’t share recessive genes that might cause diseases in your children. Other than that, you’re right, there isn’t much of a reason to get tested.

There are companies out there that are trying to suggest that they can custom tailor vitamin/mineral supplements to your specific genetic profile. I think that’s just an excuse to charge more.

It’s all very shady.

Nathaniel, All of us carry genetic mutations that will increase the risk of disease in our offspring. The question is, what’s the threshold of acceptable risk?

As for nutrigenomics, the conflict of interest comes from those who do testing AND sell vitamins. Those companies are between a rock and a hard place.

 
 
Comment by David Bradley

Dr Ann Robinson? You are the weakest link…goodbye. Meanwhile is Brian Fling’s list yet another “7even deadly sins”

db

David, You are starting to see sin wherever you go….

 
 

[...] a recent post on Eye on DNA notes, genetic testing can reveal a lot of information, sometimes more than one knows what to do [...]

 

[...] couple of days ago, much-respected DNA commentator Dr. Hsien-Hsien Lei picked up on some of the negative chatter surrounding personal genetics testing. She quoted an [...]

 
Comment by David Bradley

Funny you should say that Hsien, Monday’s Sciencebase post is “Seven Deadly Sins for Scientists” in which I come up with a few suggestions for salvation, or solvation, as the case may be.

db

David, Come back and leave a link when it’s up!

 
 
Comment by David Bradley

> All of us carry genetic mutations that will increase > the risk of disease in our offspring.

Equally true, some of us carry genetic mutations that will reduce the risk of disease in our offspring…isn’t that putatively the linchpin of natural selection?

db

Always the positive thinker. Bravo! :D

 
 

[...] That’s the 24-hour question, isn’t it? As always, Hsien manages to provide useful, interesting info for the curious as well as the scientist, with tongue still planted firmly in cheek: DNA Testing Can Ruin Your Life Forever. [...]

 

[...] Hsien at Eye on DNA had an important message for us: Do not trust any genetic testing company that does not make it clear what genetic variants they are analyzing. Never let anyone take your DNA unless they are clear about what they plan to do with it, what information they will give you from the analysis, and what they’ll do with the DNA after all the testing is complete. You are the consumer. You have the right to choose and the right to say no. [...]

 
Comment by lee dallman Subscribed to comments via email

my husband is 67. we have search for his birth daughter fo 22 years. she is 44. we found her, and her request did a dna test between her and her birth father. came back that he was not her father. another one was done between birth father, birth mother and child. it came back that he is not the father. there are so many things that say he is her father. the birth mother swears he is the father.the daughter had many fertility drugs and my husband had intense transfusions years ago. your help would be greatly appreciated. my husband is having a very hard time with this, and needs some answers. thank you

Comment by Ross

Lee, the birth mother is a fraud, he is not the father and the birth mother lies, some people will just not admit their fraud and will continue to lie until death.

 
 

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