Wednesday, July 30, 2008

All people have time bombs!

I received an email from a colleague that said..." here."

Ok, so to anyone surfing on the internet probably not a good thing to do right? My friend likely has a virus on his cpu, right? Well, being the avid risk taker I am...I click. Guess what I find.

A blog called the Belligerati...interesting name, but the blog has argument is all wrong.

"Many will see the headline Congress Passes Bill to Bar Bias Based on Genes and be pleased.
The legislation, known as the
Genetic Information Nondiscrimination Act, prohibits health insurance companies from using genetic information to deny benefits or raise premiums for individual policies. (It is already illegal to exclude individuals from a group plan because of their genetic profile.)

Employers who use genetic information to make decisions about hiring, firing or compensation could be fined as much as $300,000 for each violation.

Not me."

The blogger then goes on to detail why they think it is a bad thing. The major argument and one I have been seeing a lot of lately is based on pure fallacy and demonstrates how a very smart and educated person can be completely illiterate in genetics and genomics. I would say that about 10% of the population understands genetic risk when explained to them....that's about it.

From the blog:

There are many forms of luck in our society that we allow people to capitalize upon. For example, citizens keep the majority of the returns from wealthier parents, natural talents, being born into a rich and free society, their appearance, and temperament. Yet congress has passed a law that says that people may not capitalize upon their generic luck. This makes us less free, and ultimately less wealthy as well.

Genetics as luck....interesting. Perhaps they don't know that most heritable genetic changes are for the bad. Mistaken concept 1, in addition, Genotype + Environment = Phenome.

What sense of justice legitimizes forcing those who are poor but blessed with rich genetic endowment of healthy genes subsidize those that are middle class and endowed with a genetic propensity for several diseases? As I have said before on this blog, the way (the just way, if any) to address the suffering in our society is to give money to the poor. These back door methods, like this genetic non-discrimination rule, are often more unfair then the ills they prevent

This is super Bass-Ackwards. What sense of justice forces those with no control of their poor genetic make up to be excluded from health insurance....Man...this blogger is crazy.

His argument is that by genetic testing we should benefit from our "protective genetic make-up" and that GINA will prevent us from doing this.....

The second concept I want to clear up for everyone is this. "We can test for healthy genetic variation".....Let's get this straight. We know very little about the genes in our bodies that are protecting us from crappy environment. Eric Topol talks about this. For a cardiologist, this guy has done a great job of becoming a genetics Hacker! He says we should study the healthy, not the ill. I think he is right.

The third concept......we understand what genetic changes cause common disease. Let's get a clue. We know that several genetic changes have been weakly linked to (to be read as associated, not causative) common diseases. We also know of some very strong monogenic links to diseases like cancer and heart disease. But these are not the most common.

Francis Collins says "Everyone has at least 5 or 6 genetic time bombs in their genomes"
From the guy who headed the HGP....I'll take it at face value. We will only know this for sure by doing whole genome scans on everyone. By whole genome, I don't mean these chips that "claim to be whole genome" I mean, base by base, methylation by methylation, histone change by histone change, genome sequencing.

So if that is the case....why should insurers test for something that no one knows is a risk or protective allele. To them, it makes no sense to have meaningless data. But to have accurate tests for actuarial evaluation. That would be most worthwhile. My guess is that if they were to use this unvalidated and suspect data that everyone would be getting higher rates. So this argument from the Belligerati demonstrates the lack of genetic knowledge even in the most sophisticated and educated public.

There are other arguments against GINA. But I say, right now it is the best start we have at protecting our citizenry.

"GINA is the first major new civil rights bill of the new century," said Senator Edward Kennedy (D-MA), who cosponsored GINA in the Senate with Senator Olympia Snowe (R-ME). "Discrimination in health insurance and the fear of potential discrimination threaten both society's ability to use new genetic technologies to improve human health and the ability to conduct the very research we need to understand, treat, and prevent genetic disease," said Kennedy

I agree wholeheartedly. With so many people having at risk these SNP studies at least 1 % of the population has to carry these SNPs....That means 3 million people at a minimum are at risk of one thing or another. Genetic Discirimination is the new racism.....I hope not to see its ugly head rear for a very long time.

The Sherpa Says:
Confusion and misinformation can lead to making poor choices. That is why I advocate for education and guidance in the field of genomic medicine. How can we expect even the most sophisticated population to understand this on their own? It tooks me years of study to be where I am. And I learn something new every day! That's why we are going to launch a brand new wave of education and service shortly......


Andrew said...

We assume everyone is equal under the law not because its true but because it makes society function better.

Equality of genetics is the same.

People already excel at sorting themselves. For the readers of this blog: how many of your friends have an advanced degree from a prestigious school? From a randomly selected American population, what are the odds of your sorted social network?

The problem with too strict sorting is that people don't consider it recursively. If social sorting is too strict, too rigid, it's not only an opportunity for abuse, but it creates unpredictable selection feedback loops.

Steve Murphy MD said...

Well said Drew. Birds of a feather is precisely what alot of us fall victim to. The internet helps break that up, but does create sorting in other ways. I agree. Too much consanguinity and guess what? Outcomes inevitably worsen.