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How To Check Yourself For Abnormal Genes
AnneWoahHickey writes "While the State of California was harassing personalized genomics companies, and hindering the development of personalized medicine, Wired was preparing a guide to genetic testing. It explains how to make sense of the massive sets of raw data offered by 23andMe or deCODEme, and a way to check yourself for genetic abnormalities that are not covered by microarray tests. Facing a medical community that is fiercely resistant to change, the fate of personalized medicine is truly in the hands of consumers."
Online genetic testing exposed as a scam
"I love my job, but I hate talking to people like you" (Freddie Mercury)
Wired kindly point out that to get any ethically sound advice you should go to a genetic counsellor.
Why the rest of the article is there is then a bit bewlidering. It's like they're saying if you want meaningless information and bad or dangerous advice, and you want to pay a lot of money for it, these are the places to go.
specialized companies test genes. brac gene (breast cancer), apoe (alzheimer's), fragile x, etc. you can do this by mail even
just make sure to use a name like donald duck or dick johnson. you don't want this info getting to insurance companies
might as well test that little 1 year old (not any older, consider the trauma for the kid) for parentage too. it has been speculated that something like 10% of babies born before the age of genetic testing were raised by fathers oblivious to the fact they were not the real genetic father of the kid
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
I agree with your basic statement, but I read the article in a different way: "You can ban the labs, but this knowledge wants to be free. Amateurs can step into the vacuum if the pros are kept out."
Just as the early PC's were toys that developed into powerful tools, there is a potential for the interested public to start with haphazard work and, if denied a legitimate source of the information, develop into something usable.
Requiring the test results not be released to anyone but the PATIENT would strike me as a benefit to privacy. No releasing to anyone but the doctor is a whole different issue, having nothing to do with privacy and everything to do with an (justified or not) lack of faith in the general public's ability to have access to their own data without turning into raging hypochondriacs.
> a (justified or not) lack of faith in the general public's ability to have access to their own data without turning into raging hypochondriacs.
Maybe it would be good for people to know more about their risks of having certain diseases. It puts other things in perspective. Why worry about terrorists when you are 10.000 times more likely to die in some other way? Why be a hypochondriac when it is X times more likely that you'll die in a car-crash?
Give me a break - the medical community is enthusiastic to the point being mesmerized by personalized medicine. Consumers need to worry about the "self fulfilling monopoly" aspects of personalized therapy. Once you have spent a lot of time and money diagnosing your unique disorder, the drug company offering you a customized treatment effectively has no competition. There is a good chance that they will charge painfully exorbitant prices. Look at recently released cancer drugs like Avastin, treatment costs $90k per patient per year!
The real issue is demonstrating that these strategies are effective when the specific treatments are only being given to a single patient. Hard to design an objective clinical trial validating efficacy under those conditions. The fate of personalized medicine is truly in the hands of the FDA.
P.S. Agree completely with the comments that this "how to" article is infeasible and written by someone with serious misunderstandings of the technology and underlying science.
Statesman
That is true but we must acknowledge that many if not most such claims have failed to replicate and they are probably mostly statistical errors -- do enough research and you will eventually "find" something that isn't real. Those of us in the business are highly skeptical of all original claims unless they are overwhelmingly strong. In the absence of consistent replication we tend to withhold judgment on the validity of a result.
The article continued:
If you are checking yourself for a certain genotype, then we could say that you are checking yourself for an inherited trait, but we usually don't refer to genotypes as traits. I think the author of the article is presuming a strong relationship of a genotype with some trait like a form of cancer, asthma, longevity, schizophrenia, myocardial infarction or stroke. He then suggests that readers can study that trait in themselves by looking at their genotypes. Unfortunately, even if the studies that claimed to establish an association of the genotype with the trait were correct, the association might be so weak that it isn't clinically useful. For example, if schizophrenia occurs in 1% of the general population but in 1.2% of people with a certain genotype, that is a 20% increase in risk for that genotype, which might lead to a statistically significant result that is published in a journal, promoted by a university press release and then published in newspapers all over the world. But to any individual, knowing their genotype would change their schizophrenia risk by only 0.2%. Is it worthwhile to know about such a minor risk factor?
It gets worse. The person who tests himself might then decide that he is a high-risk person or a low-risk person based on this one genotype, but that is a very bad way to decide risk. With schizophrenia, for example, a positive family history can increase your risk by a factor of 10 or more (depending on which relative[s] are affected). Also, having pre-schizophrenic symptoms will imply higher risk. Age of onset is usually before age 40, so people older than 40 who are not already schizophrenic have low risk. So a 20-year-old man who is having mild hallucinatory experiences, coming up with really odd ideas and who has two schizophrenic brothers might take the test, find out he doesn't have the 1.2% genotype and conclude that he is at low risk of schizophrenia. He would be mistaken.
With regard to heart disease: Ignore your genotype but watch your blood pressure, eat well and exercise. Same for stroke, diabetes, obesity and many other traits.
Most of the value in new genetics research for so-called "complex diseases" (a.k.a. multifactorial diseases) is in the implications for breakthroughs in understanding pathophysiology. Most findings have little or no implication for individuals.