Posts Tagged ‘Genetic Information Nondiscrimination’

Fiddling with your Genes, Google or Government?

April 24, 2008

A few days ago, the senate, following the lead of the house, has offered the Genetic Information Nondiscrimination act.

In a nutshell, they wish to make it illegal to discriminate in the work place against someone based on their genetic make up. While I can see why they are pursing this path (you would not want to have DNA tests preclude you from getting a job because you had a statistically higher chance of developing an infirmity that could cost your employer in raised health insurance premiums), I believe it may be a little short sighted.

One of the predicates seems to be that your DNA, your genetic make up so to speak, is an immutable part of whom you are. But as we keep hearing of near breakthroughs in eventual genetic medicine, what will happen as people begin to cure conditions or alter themselves with the addition of new DNA? If your Lyme disease can be cured by the introduction of a gene pattern from someone else that allows your body to handle it differently, well, which set of DNA is really you after that?

The issue comes down to the fact that DNA is information and information has value and information can change.

In a previous segment I wrote about designer genes and even coined the term LSDNA for what may eventually be recreational genetics. The new laws notion of genetic immutability may indeed wind up in the Supreme Court when some baseball player has genetically modified his eyesight to be able to improve is visual reaction time and allow him to up his batting average.

We have all seen that the senate and the media are ready to stop focusing on war, foreign policy, the economy and general state of the planet in order to investigate any possible method that baseball players may use to gain some slight advantage. So obviously a serious national issue.

I can just see some centerfielder testifying before congress about how he is being discriminated against due to his new genetic make up.: “Genetic information Discrimination law , yer Lordship. That’s my story an ah’m stickin’ to it.”

In the mean time, folks in the information business are beginning to sniff out the fact that DNA is mostly about information. Lat year, Google invested over $4 million in 23andme , a company that will test your genes and tell you if your ancestors were more likely to have been the invaders or the invadees in the glorious past written deep in your chromosomes. Since this company is all about accessing and organizing genetic data, it stands to reason that Google would invest based on their mission: organizing the worlds information and making it universally accessible and useful while stuffing as much money in our pockets as we possibly can until we can get our ourselves more, bigger pockets.

More recently, Google quietly invested an undisclosed amount in Navigenics. This company has a different approach. They too function with the cotton Q-Tip method (remind me to invest in the companies that make these cotton swabs) but their goal is to let you know if are likely or not to develop cancer or Alzheimer’s the heartbreak of psoriasis and give you the tools to alert your doctor and have both his accountant and lawyer respond to this new situation.

This all leads me to the issue at hand which is, who owns that information (yes, that again)?

After all, if the data gets published then is it then public domain? This may be important for privacy issues but will really become important when we begin to discover that some of us may hold certain genetic patterns that could have real value.

Imagine dear reader, that you are one of the fortunate who possesses the genetic make up that would allow you to smoke two packs of lucky strikes a day without any predisposition toward lung cancer. There seems to be some proof that certain people are more susceptible to cigarette smoke than others (the luck of the draw , so to speak).

Now, if this gene combination that your blessed ancestors have so carefully selected for arrives in your body, how would you feel about some company exploiting that for gain.

Wouldn’t you feel that you have a right to be remunerated for this DNA that is your own?

And how will it stand with you if Google, who is out there making the data available (monetized in some God-knows what pay-per-chromosome auction model) without ever letting you in on the bounty celebrated from the wonderful cure springing from deep in your cells?

Which brings me back to the new senatorial initiative, it seems to predicate that not only will your DNA be immutable, but that the data will be easily available to those who may want to type you.

If a day at the motor vehicle bureau never frightened you about nationalized health care, this one should scare the be-geneses out of you.