19Fucking84
Don't think it's come to that just yet? Read this.

Welcome to Gattaca, population YOU.

Update: I wrote to my friend Emily, who's in epidemiology, about this whole thing. Here is her analysis (with my smart ass comments added in blue).

Me:

Emily,

I'm curious what you think of this:

http://junkfoodscience.blogspot.com/2008/05/have-you-heard-new-on-federal-genetic.html

If I'm reading this correctly, the wild conclusion my brain jumped to is that there will be a whole generation of kids that could eventually be turned away from jobs, schools, etc. because "It says here you have the alcoholic gene", etc. Gattica, much?

But you are a Scientist (capital S), so I thought you might be less reactionary than I.

Jen

Emily:

hmmm.... the first bill looks to me like a standard funding bill for reasearch on genetic disorders. As far as I can tell it mandated that HHS collects and distributes information about newborn screening not the results of the screening tests.

While people do not always follow the guidelines and not all medical groups/insurance companies are above board, reasonable groups only recommend screening when 1. the disease is treatable (this is waived for a few diseases like Huntington's and very early onset Alzhemier's because of family planning issues) 2. the test works well (not too many false positives or false negatives) and 3. the disease is common enough (however you define that) that it makes sense monetarily. Sadly, we can't spend billions screening every kid to save one.

For some reason the amount considered reasonable when averaged per year saved is $50,000, though for small children it would probably be more. (Aren't you impressed that I remember what I learning in screening class) With the exception of a few highly contagious diseases, almost no screening is actually mandatory.

Right now the tests that are available are not great. Except for a few single gene diseases (cystic fibrosis, muscular dystrophy, phenelketonuria) most of the genetic information we have is more of the nature "the overall risk of alcholism in the general population is 1 in 8. Having gene X increases the risk by about 20%, so with this additional information the risk is 1 in 7." (I made those numbers up, but that's the correct order of magnitude for most commonish diseases like heart disease, colon cancer, alcoholism, depression, diabetes, etc.) So it is unlikely that there will be massive mandatory screening programs any time soon. It would be a massive waste of money.

What people opt to get screened for is a totally different issue, and there are commerical tests out there already which honestly tell a person very very little about disease risk. They don't go in the medical record (see points below), but you have very little recourse if the company decides to sell your medical information.

The second bill makes sense in the framework of the way other medical information is handled. This is outlined in a bill called HIPAA. Anything in your medical chart with the exception of notes from mental health visits can be shared with insurance companies, other doctors/hospitals, and government agencies without your permission.

Whether this is reasonable is something of a different story but was instituted for pragmatic reasons (so the hospital can bill the insurance company without asking your permission for each bill and so if you are in the hospital they can get your records from your doctors). There are limits to how other information can be shared (I can't call your doctor and ask for information about you). If I want to do research using the information collected by my hospital, I have to go before a board, explain what I want to do, why I can't get the information another way, why I can't ask permission from each person, and how I'm going to protect that information. In addition, every researcher who does that sort of research takes a yearly class on the right way to handle the data. This is taken very seriously and people do get fired and arrested for looking at other people's information.

The genetic stuff is actually now more protected than other health information because an insurance company can legally discriminate against people based on every other aspect of medical history* (chronic disease, smoking, etc). Employers and schools are not currently allowed to discriminate based on illness, so I can't imagine that they would be allowed to discriminate on a propensity for illness.*

This strikes me as a short walk from point A to point B (which happens to be at the bottom of a gorge). Employers already discriminate based on credit history - they can't search it without your signature, but good luck getting a second interview, never mind the job, without allowing them to run your reports.

So this is way more than you were probably expecting, but there you have it. What really scares me is the law enforcement genetic databases, but I don't actually know anything about those.* :)

Thank you for the smiley face, that makes me feel much better.

Seriously, thanks Emily for pitching in your $0.02 on the subject, it is much appreciated.

*Emphasis mine.