Friday, May 2, 2008

Genetic Information Non-Discrimination Act

Yesterday the House voted 414-1 to approve the Genetic Information Non-Discrimination Act, which says that employers and insurance companies can't discriminate on the basis of a gene scan. That means (after Senate ratification and presidential signing, of course) that you can't be denied employment or coverage for diseases you don't have yet, but are at genetic risk to acquire in the future. I'm very interested in this. My interest comes not from my personal genescan (I've never had one) but because I wrote about this as long as fifteen years ago, in "Mountain to Mohammed." In that story, society is divided into the insurables and the non-insurables, and you pretty much can't get health care at all if you're in the latter category.

It's always good to realize that one's more dystopic visions can get counteracted by the future. Which is not to say that we don't have huge numbers of uninsured people (45 million, including some people I love). Financial issues can exclude just as effectively as genetic ones. However, I'm pleased by this act of Congress not only on practical, but also on literary grounds.

Because SF is made up of stories, and stories need conflict, we writers tend to come down heavy on the negative side of not only political but also scientific developments. That attitude short-changes scientific progress. I think that gene scans will, in the long run do far more good than harm -- even if my story said otherwise.


TheOFloinn said...

Does it also mean that insurance companies cannot price their product by taking risk into account? In the long run, that can destroy the insurance pool. Shaw wrote an essay once, "The Vice of Gambling and the Virtue of Insurance." The pool works because everyone pays in and only those who need it draw out.

We decided to pretend years ago that teenaged boys and teenaged girls were alike at risk as drivers. This did not lower insurance premiums for teenaged males; it raised them for teenaged females.

But if it is not right to charge different premiums for different risks, how do we justify higher premiums for the overweight, for smokers, for the older?

The real problem is that we have decided that other people are obligated to pay for our medical expenses. That is the whole reason for insurance pools - we "pool" the risk. But it also means that prices rise to meet the amount of money in the pool, and soon individuals find themselves unable to pay doctors (who no longer take the Hippocratic Oath.) It's a vicious positive feedback cycle.

In a sane universe, an early genescan would result in setting up a medical savings account at birth against the day when the genetic disease manifests itself. But the next sane universe found will be the first.

Nancy Kress said...

It seems to me that you lump several disparate things together here. Higher health insurance premiums for the obese and for smokers are different from higher premiums -- or denying insurance altogether -- for those with genescans that show they might develop a disease later (or might not). The former two are matters of choice -- the latter is not. as for age, my group insurance (obtained through an Arts Council) makes no premium difference based on age.

TheOFloinn said...

It seems to me that you lump several disparate things together here. Higher health insurance premiums for the obese and for smokers are different from higher premiums ... for those with genescans that show they might develop a disease later (or might not). The former two are matters of choice -- the latter is not.

That could be. Perhaps the purpose of an insurance premium is to punish people for their sins - actions deemed by society to be seriously wrong - but not for original sin - that which is inherent in their very nature.

Yet the discourse over smoking and obesity persistently uses the language of addiction and victimization. To what extent does a smoker freely choose to continue smoking? There are certain ethnoi that are prone to obesity as they grow older: should we charge different premiums to different ethnic groups?

In any case, the solvency of the insurance pool depends only on setting the premiums commensurate with the risks, not on whether those risks were incurred voluntarily or not. (Skiing? Non-standard sex? Motorcycling w/o helmet? All of these entail risks not affecting those who refrain.) This is plain old thermodynamics: the pool must collect more in premiums than it pays out in benefits. If it doesn't: no more pool, and no one receives benefits.

The real asp in the basket, imho, is: might develop a disease later (or might not). For those who believe in genetic determinism there is no "might not," but for the rest of us the matter is more uncertain.

In fiction, good versus bad is melodrama. For genuine tragedy you must have good versus good; and this requires a sympathetic vision of the opposing view. For a Christian there is no question but that the larger pool should pay a higher premium so that those at greatest risk can afford the coverage. Charity is obligatory. But I can see where a teen-aged girl might resent higher auto insurance premiums just so teen-aged boys can afford to drive.

bluesman miike Lindner said...

Interesting points, Mike. But I wonder if tragedy =necessarily= means good vs. good. How about MACBETH?

And I doubt teen-age girls worry big mucho plenty about auto insurance costs. Their fathers, who are paying for it, probably do!

Best, Bluesman Mike

bluesman miike Lindner said...

Genetic Information Non-Discrimination Act...


If that's not a female name, it should be. Very pretty, to my ears!

Unknown said...

These regulations are a good idea, but there still seems to be some holes in the new laws. For instance, health information is not the only thing you can get from your DNA:

For example with the wholesale collection of DNA the government, or any company that so wished, could compile a DNA fingerprint database or trace your ancestry.
It's not clear how the new regulations would apply to this. Perhaps the best way to stop companies/governments abusing genetic information, is to not only protect the information, but not let them have it in the first place.