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Caveat Emptor

by Bill Osler / March 23, 2008 2:45 AM PDT

Sometimes a little knowledge is a dangerous thing:

Home bipolar disorder test causes stirs - Yahoo! News
Dr. John Kelsoe has spent his career trying to identify the biological roots of bipolar disorder. In December, he announced he had discovered several gene mutations closely tied to the disease, also known as manic depression.

Then Kelsoe, a prominent psychiatric geneticist at the University of California, San Diego, did something provocative for the buttoned-down world of academic medical research: He began selling bipolar genetic tests straight to the public over the Internet last month for $399.

His company, La Jolla-based Psynomics, joins a legion of startups racing to exploit the boom in research connecting genetic variations to a host of health conditions. More than 1,000 at-home gene tests have burst onto the market in the past few years.


I have mixed feelings about all of this. The first question is 'are these tests accurate?'; next is 'do the results mean anything?'

One of my biggest concerns about home diagnostic testing is that people may be doing the test without any real understanding of what they are finding. I have more knowledge about medical science than the vast majority of the population, but there are still times when I am hesitant to make a final pronouncement regarding what a test result means. Some of these things really do require an understanding of how the results fit into the overall clinical picture. For example, a patient with an inflamed joint and a positive rheumatoid factor does not necessarily have Rheumatoid Arthritis, nor does a patient with chest pain and an elevated CPK level necessarily have a heart attack. All of those subtleties get lost when these kits are distributed to relatively untrained patients.

In this specific case the situation is complex. There are times when even the psychiatrists do not completely agree on which patients have bipolar disorder. How then is a patient supposed to interpret the test results?

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IMO a logical extension of several trends,
by drpruner / March 23, 2008 3:51 AM PDT
In reply to: Caveat Emptor

including the original in Western medicine: 'Take a pill for it.'

BTW I wouldn't do it, and I'm half-crazy!

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how do you feel about...
by James Denison / March 23, 2008 3:54 AM PDT
In reply to: Caveat Emptor

....home blood sugar level testing for diabetics? I think any home test that is accurate and proven should be encouraged. There's plenty of people who may take a home test before they'd go see a doctor. Home pregnancy tests are helping women seek a doctor's office even quicker now than they might have in the past, and contributing to healthier babies.

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Those test have been proven to work
by critic411 / March 23, 2008 4:14 AM PDT

+ or - whatever degree of accuracy. The test mentioned above hasn't been proven yet.

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I wouldn't encourage all tests ...
by Bill Osler / March 23, 2008 4:53 AM PDT
I think any home test that is accurate and proven should be encouraged.

I can't really agree with that. Home glucose testing is useful, and most of my diabetic patients do home monitoring, but it is over-rated IMO. The point is NOT to generate a list of sugars that the patient drags in to an appointment. The point is to use the results to help the patient manage their diabetes by recognizing and correcting problems. Most patients never quite take that second step. They just record their results. I can't encourage that. It's a waste of time and money.

You really can't justify a test based solely on accuracy or being 'proven' (whatever that means in this context). Home pregnancy tests are quite accurate, but they are useful ONLY to the extent that they help people make better decisions about when to seek appropriate medical care. Similarly for home HIV tests. FWIW: Although I think that home pregnancy tests (and fertility tests ...) are useful I am not convinced they actually do much to improve pregnancy outcomes. Modern Americans feel empowered when they have more knowledge, and there's nothing wrong with that per se, but knowledge and power do not ALWAYS improve results.

Even if the test is accurate and potentially useful there is no point to doing the test if the results cannot be reliably interpreted. In the case of something like a home test for bipolar genes that last part is simply not possible for non-professionals. Self-diagnosis of psychiatric conditions is potentially dangerous even for patients who have adequate clinical skills. Improper application of knowledge can be harmful.
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I am a diabetic
by Diana Forum moderator / March 23, 2008 9:21 AM PDT

I use my meter to tell me what not to eat (or at least not too much of Wink ). That's one of the reasons I don't eat Grape Nuts anymore. It really spikes my blood sugar. I do love them though. It also tells me when not to take my medicine. Since I've lost 35-40 pounds, I can't take one of my medications anymore because it drops my sugar like a rock even when it starts out high (over 200).

I did have a meter that registered too low and I messed up my medications. Now I have two different kinds of meters so I know they are more accurate.

A friend's mother has diabetes and she told me that her mother's sugar was OK, only 220 before she ate. I don't know what her doctor is thinking but I showed her my sugar readings and she was shocked. She didn't even know what an A1C test was.

Diana

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That sounds like a reasonable use of the meter ...
by Bill Osler / March 23, 2008 9:28 AM PDT
In reply to: I am a diabetic

You are checking your sugars and adjusting your lifestyle based on your results. Your friend illustrates why some patients do not benefit from the monitoring.

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Someone would buy a test kit
by Steven Haninger / March 23, 2008 4:04 AM PDT
In reply to: Caveat Emptor

that would predict the certainty or uncertainty of their eventual death....100% guaranteed or double your money back. It's all in how it's marketed.

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Statistical relevance...and reason to worry
by Steven Haninger / March 23, 2008 5:04 AM PDT
In reply to: Caveat Emptor

According to the article, a positive result means the person is 2 to 3 times as likely to be affected by the disorder. Without providing the link, it's suggested that about 2.6% of the population is "affected" by bi-polar disorder....which means 2.6 out of 100 persons. As such, a positive result would mean one's probability of joining that group is still less than 1 in 12. The dice are still well in your favor. I'd think it would be of not much value unless other's around you have seen behavior that suggested a screening would be worth while but it seems there are some "forces" out there that want to create and/or exploit people's paranoia. Of course, paranoia is also treatable even if no clinical condition exists.

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I don't know that paranoia is all that treatable ...
by Bill Osler / March 23, 2008 5:55 AM PDT

But, I do agree about the statistics.

Personally I think the test is a waste of time unless the technology improves to the point that the predictive value is significantly better.

The only thing they did right was deciding that the results should go to the patient's doctor rather than the patient. Even so, most doctors that I know are not terribly sophisticated consumers of statistical information. It's still problematic.

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I'd think this could put a person's physician in the
by Steven Haninger / March 23, 2008 10:52 AM PDT

precarious position of feeling a need to respond to the positive result just to protect him/herself from a potential lawsuit. No doubt the use of an unproven testing method would be rejected in a courtroom situation but any lawsuit is an expense and a hassle regardless of the outcome. I've wondered how doctors deal diplomatically and tactfully with patients who are inclined to bring their own diagnostic findings to an office visit.

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Dealing with the patient if variable ...
by Bill Osler / March 23, 2008 11:05 AM PDT

I have some patient who are quite bright and it is easy to explain why things are or are not important.

I have other patients who are not nearly as bright as they think they are. Explaining things to them can be challenging.

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I can see only limited value in such a test, and
by Kiddpeat / March 23, 2008 1:17 PM PDT
In reply to: Caveat Emptor

certainly none within the home. It seems that the test would simply detect a predisposition even if it is accurate. It would not tell you whether you are currently experiencing a bi-polar episode or not.

A doctor might be able to tell a patient what to look for in terms of symptoms. However, I suspect no medication would be prescribed if a bipolar episode had never occurred in the person's life.

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