$1,000 Personal Genome Test, will you ?

[rhody]

http://www.webmd.com/news/20100429/1000-dollar-personal-genome-coming-are-we-ready?page=2"

If and when the day comes that a single technician can perform a personal genone test for 1000 $ will you ?

The implications, ramifications, intended and unintended consequenes of taking it are huge for yourself, your immediate relatives, for the medical community, for insurance companies, for government, (local, state, federal) and for society in general...

From the article:

It's not science fiction. It now costs less than $10,000 to learn your own personal genome. Soon it will cost no more than $1,000. What might you learn? Ask Stephen Quake, PhD, a Stanford University bioengineer.

Recently, Quake and colleagues showed that a whole human genome -- his own -- could be unraveled by a single technician using a single machine.

When a 19-year-old relative died suddenly in his sleep, Quake began to wonder whether the information he collected could tell him whether he risked the same fate. He took his genome to cardiologist Euan Ashley, MD, who runs Stanford's hypertrophic cardiomyopathy center.

"This made me start thinking about what doctors are supposed to do when a patient walks into your office, shows you his whole genome, and asks, 'What is in my crystal ball?'" Ashley tells WebMD. "It's a challenge. Lots of people have looked at human genomes, but nobody had ever looked at a single patient before."

Rhody...

 

[rhody]

The silence is deafening, and from a semi-exposed public forum like this I understand why.

My personal view, sheltered for purposes of discussion here is that if I was aware of every risk factor that (100 potential stated in the article) that it could lead one in an endless spiral of worry and not being fully engaged with life, taking and enjoying each day as it comes. I tend to be a natural worrier anyway, which I am working on, but a test like this would not be good for it.

I have a family history that has disease that strikes immediate family in middle, late years, and have taken lifestyle steps to keep myself healthy, mentally, emotionally, physically from falling victim to them. That is the best I can do.

One upside to the test is that you will be alerted to the effects of certain drugs on a condition that may be effective or ineffective, from the article:

While it isn't what you'd call really good news, Quake did learn a number of helpful things. He's genetically more likely to respond to low doses of cholesterol-lowering drugs with a lower risk of side effects (in fact, he's begun taking the drugs even though he's only 40).

And should he ever need the drugs, Quake learned that he's less likely to respond to the blood-thinning drug Plavix than to alternative drugs, and he would need a lower starting dose of warfarin.

In the end, it's all about the cost versus benefit of the test. I would say I would have to pass on it.

Rhody...

 

[mgb_phys]

I was involved with a startup that was planning on personal gene sequencing.
The idea (or at least the pitch to VCs) was that your doctor could then tune the drugs just for you = personalized medicine.

The effect on insurance company cherry picking was supposed to be removed once EVERYBODY had this test - since everybody would have some genetic skeleton in their closet - where as if only a few people are tested then the insurance companies are able to exclude those. Like they used to exclude you on the basis of having had an AIDS test even if the result was negative - because you must have a risky lifestyle to be tested.

I was never convinced of the theraputic value, almost all the drugs prescribed by family doctors are acetaminophen/antibiotics/prosac anyway - the idea that there would be an infinite number of antibiotic synthezised for your particular mix of genes never seemed very likely.

Testing everyone at birth might be useful for rare genetic conditions. But if your mom died of breast cancer at 40, or all the men in your family had heart attacks at 40 then testing your genes as a 30 year old probably doesn't tell you anything you didn't already know.

 

[waht]

Also it seems that most people don't care about their health even if they know are susceptible to certain diseases. Hence I think a personal genome will be useful to a more limited range of people.

 

[rhody]

http://abcnews.go.com/WN/counter-genetics-tests-good-idea/story?id=10612733"

Pathway Genomics, a San Diego company, has announced that beginning Friday, shoppers at most of Walgreens' 7,500 stores across the U.S. can buy an over-the-counter genetics test. The test would scan their genes for the possibility that they'll develop such conditions as Alzheimer's disease, breast cancer or diabetes.
The test consists of a salvia collection kit, and costs between $20 and $30. The saliva sample is sent back to Pathway Genomics labs, and from there, users can log on to Pathway's website for a series of services that range form pregnancy planning to testing for health conditions.
Critics of the test have already emerged, and say putting genetics testing into untrained hands could lead to unnecessary testing and missed diagnoses.
"Genetic testing is a complex, difficult and emotionally laden medical process, which requires extensive counseling, contextualization and interpretation," said Dr. Michael A. Grodin, professor of bioethics, human rights, family medicine and psychiatry at Boston University Schools of Medicine and Public Health.

From the blue highlight section above, my question would be, what other probable conditions are being scanned for ?

My original opinion that I wouldn't want to know still stands, even when cost is not a factor.

Rhody...

 

[Frame Dragger]

I don't wish to know of risk factors for which there is no meaningful treatment or prevention.

 

[apeiron]

I've had the 21andMe personal genome test (because I was writing an article on it).

I would say it is mostly fun and not as yet deeply meaningful. But then there was nothing surprising that popped out of my test - apart from a slightly elevated risk of iron-poisoning from eating too much red meat.

But on the other hand, there is at least one risk I would never have guessed and can now be alert to. And other people might find much more valuable warnings in their data.

The gene testing is being used just as much as a genealogy tool - on 23andMe and similar services, people just love tracking down others who might be related. So another social networking fad. Harmless fun. On my mother's side, I can claim her ancestors were the first wave of homo saps into Europe, for what its worth.

Where this technology may actually in the future become powerful is where you do have a condition and you want to research a cure. Say you had multiple sclerosis, then there is potential to get together with others with genetics most similar to your own and so optimise treatments, spark more targetted research.

Overall, it is a brand new technology. And like the microprocessor chip revolution, it is hard to predict in the early days just how much could flow from an exponential curve of technology improvement.

23andMe have yet to release the alzheimer's gene results (last I checked). That has indeed become one of the moral tests of the current technology.

 

[IcedEcliptic]

I would consider this. There may be no therapies now, but a smart person already knows risks, and this could get you into trials or novel therapies faster perhaps. "Forewarned is forearmed," but this must include trust that you will not be discriminated against for your genes. I have heard that the first lawsuit of such is in the works in the US. Maybe I can find the link.

 

[rhody]

A personal observation about interest versus participation in this subject, it appears from the number of hits to this thread that plenty of folks are interested, but the response rate reflect only about 1/100th of the interest.

I am not really sure why, invasion of privacy, natural fear, apprehension, receiving information that could later be proved not true, causing unnecessary anxiety, all legitimate reasons.

Rhody...

 

[rhody]

http://www.newsweek.com/id/238162"

Interesting article, seems like we still have a longggg... way to go before we can with a fair degree of certainty predict onset of disease, beyond age adjusted statistics that is now used to quantify number of new cases of various disease.

Rhody...

 

[IcedEcliptic]

How about the fact that is 1000 bucks? That's a lot of cash for a test of dubious value.

 

[rhody]

How about the fact that is 1000 bucks? That's a lot of cash for a test of dubious value.

Ice,

See post #5 above, the cost is 20 - 30$ unless the source ABC News has it wrong from the source, and I agree even at that cost it still is not reliable.

Rhody...

 

[mgb_phys]

The kit is $20-30, the results range from $250 for ancestry to $400 for health according to the website.

But these only check for the most common, 'increased risk of' genes. So a particular gene means you have a few % higher risk of heart disease - but your diet and exercise have a much bigger effect.
If people used the test and discovered - oops I have that gene I better cut out the cheese burgers and hit the gym, great, but more likely is that they test negative for that gene and decide they are immune from heart attacks.

Most of the genes they test for are obvious from either a family history or racial background. They don't test for the rare genetic conditions that might be useful to treat people early.

 

[IcedEcliptic]

Ahhh, I should have read more carefully. I still think that the reliability and prospects of overconfidence or anxiety outweigh the benefits now. For genealogy, I believe it can be fun and useful, but then so are records on microfiche.

 

[rhody]

Interesting BBC article: http://news.bbc.co.uk/2/hi/health/10367883.stm"

The Hospital will study those who participate to examine heart/lung health against genetic markers, where abnormalities may occur, and yet have the individual show no sign of disease, alternatively, with people who have heart conditions and no known gene history to go with it, to discover what those genes are and then to develop treatment for it. From the piece:

In all 10,000 patients will have their genes sequenced at the Royal Brompton Hospital, which specializes in the treatment of heart and lung conditions, over the next 10 years. They will also have a detailed MRI scan of the heart to show how it is functioning. The study has been made possible because of dramatic progress in the speed of DNA sequencing. The research project is funded by the National Institute for Health Research, which awarded £6m over four years.

and

It took 13 years to completely sequence the first human genome. The Sanger Institute can now sequence an entire genome in 13 hours.

I find it interesting that this study is funded through NIST over a four year period.

Rhody...