We're from the government -- We're here to help you, and besides, if your newborn hasn't done anythi

[kinzel]

We're here to help you, and besides, if your newborn hasn't done anything wrong you have nothing to worry about ...

OK --

http://www.cnn.com/2010/HEALTH/02/04/baby.dna.government/index.html?hpt=Sbin

Two questions?

1) does this bother you?

2) Is this something we can improve? Should we all walk in to have our DNA put in a file with our fingerprints, retinal pattern, and voice print, or not?

Comments

[rahaeli.livejournal.com]

I don't really have an opinion on DNA screening of children at birth for genetic disorders, except to say that parents should give consent, but I do feel compelled to point out that the form of screening the article's talking about is not the same form of forensic DNA identification made (inaccurately) popular by shows such as CSI. The screening that article's talking about is for genetic diseases, and the screening used for forensic purposes is far different: it uses the 'junk' DNA that doesn't code for the expression of any traits. (There are thousands of places in the human genome where it gets 'stuck', hiccuping out endless repeats of the same sequences like someone's finger got stuck on the copier too long; forensic DNA screening counts up the number of hiccups at 13 separate points, in the bits of the genome that aren't used for anything, and has absolutely no bearing on looks, health, etc -- it's total garbage.)

So, screening for genetic disorders can't be used for identification, and screening for identification can't be used for discovering genetic disorders. (Not just isn't, literally can't.) It isn't the equivalent of fingerprinting all babies at birth and putting them into some sort of identification registry.

[jerusha.livejournal.com]

Well... yes, and no. If they store the results of running the disease screenings, I'm fine with that. I'm uneasy about the insurability ramifications, but hopefully those will soon be less of an issue, one way or the other.

However, if they store a genomic sample (by, for example, storing the blood sample), hypothetically there's nothing to stop them from running the RFLP identifying tests ("DNA fingerprinting") later.

[rahaeli.livejournal.com]

Well, yes. But (and I was only skimming the article, I admit) I read the article as hospitals running the disease screenings, not storing the sample itself. I May Be Wrong (but either way, I'm loud about it).

[masgramondou.livejournal.com]

1) Hell yes.

DNA screening is fine by me. I think we should (and probably soon will be able to) have our DNA analysed. BUT this has to be done under our control.

Hiding this stuff is exactly the sort of thing that feeds paranoia and the junk science. And yeah I know it isn't exactly hidden, but effectively it is. It's like software EULA terms where you discover that you've promised your firstborn if you do something the software maker thinks you shouldn't. People don't like this because they(we) have learned that these sorts of things always end up with mission creep to something more controlling or with some scumbag abusing the system.

As I say I think the screening itself is probably a good idea. And the keep the DNA on file with name for N months (N<=12) rule is fine. Likewise I think that keeping anonymous DNA samples is OK. But keeping this sort of thing indefinitely without consultation and explicit permission is something that is just asking for abuse by someone later.

[orlacarey.livejournal.com]

The DNA screening thing is one thing, though it really should be something that the parents are at least told about. I can see the idea that asking isn't really workable because of the perception that lots of people won't understand what they're actually testing for and will knee jerk say no. That doesn't make the not asking right.

As far as storing the DNA? No I don't think it's right but I think at some point a registry of people's DNA/fingerprints etc is going to happen. Hopefully not in my lifetime but it will happen someday.

[n6vfp.livejournal.com]

The screening for potential disorders is okay, but permissions have to be granted. Also, the DNA sample needs to be discarded after a limited time. There is sometimes a disconnect between need to know vs, nice to know. This is a nice to know situation. I always wonder if my Lupus is a predisposed genetic disorder or the result of exposure to some outside agent. I really object that long term storage could impact future employment or eligibility for insurance.

[baggette.livejournal.com]

NO! NO testing without EXPRESS parent knowledge and Consent! NONE.

Has anyone seen the movie Gagtica or read 1984?.

If the kid aint broke, do mess with it!
Hasn't our government FAILED at their attempts to protect and serve us enough times already? Less government, less messing with Nature, less invasion of my privacy!

Did I mention that I think this is a very bad idea?

[jhetley.livejournal.com]

All governments everywhere have always assumed that they own their subjects . . .

[craig trader (by livejournal.com)]

Well, what do they do on Liad?

Here in the US, we have a long history of slippery slopes: data collected for ostensibly good purposes is all too frequently used for other reasons, all of which have publicly acceptable slogan (War on Drugs, War on Terror, 9/11, etc). Thus, I expect that someone will find some way to use the collected DNA, in some manner that I don't approve of. This doesn't directly affect me, but I disapprove of it, if only for the precedents it set.

Giving a bureaucrat data is like giving a mouse a cookie...

[pgranzeau.livejournal.com]

Welcome to the 21st century.

[mardott.livejournal.com]

It's wrong. They absolutely should seek permission from the parents. There is no jusitifcation in the universe for building a secret database.

But as for genetic analysis: it's the way of future. I expect there'll be a day when we all have our medical history, including genetic markers, encoded on a chip inserted somewhere in our body. The chip will be easily read by medical personnel and probably law enforcement, too.

The potential for abuse is astronomical. But for starters, it should be easy (ha!) to assure that everyone receives lifetime medical care, regardless of their genetics. We'll get there, someday.

Job assurance? Well, when employers no longer have to pay for medical care, they may be less worried about hiring someone's genetics.

As for uses the government might come up with: we're in serious trouble. They'll try anything, and all the lawsuits in the world won't stop them.

[redpimpernel.livejournal.com]

-Testing newborns without permission - okay. They don't ask parents permission to take height/weight/APGAR etc. It's simple data gathering.
-Keeping identifiable DNA samples indefinitely - wrong
-Keeping anonymous DNA samples for research purposes, what a boon!

The thing that I think is really noteworthy is that everyone is terrified of insurance companies holding our health info against us. So much so that people won't pursue treatment or diagnosis of some ailments, lest it potentially affect their future insurability, to the detriment to their current health. Is that crazy? There is something very wrong with that. Takes 'don't ask, don't tell" to a whole new level - don't heal.

I have a relative in the military who refused to get "official" treatment for their potentially autistic son because they didn't want that kind of diagnosis in the military parent's permanent record (even though it was a family member and not the parent. They thought it would effect their security rating and would ruin insurability in the future.

[grassrose.livejournal.com]

It wouldn't hurt their security rating at all. I have friends with autistic kids and clearances above top secret, but yes, it wouldn't surprise me at all if it made certain types of insurance harder to get.

[(Anonymous)]

I would bet that parents give consent in general terms when they agree to have a doctor deliver their baby - there's probably some general phrase about "testing" that could be interpreted to cover this type of screening. I strongly agree that the screening should be performed - a parent should be informed of potential health problems so that appropriate steps can be taken.

I also agree that the data and or samples should be available to researchers - without identification to a specific person. As long as we have our current health care system in place, anything that could potentially affect insurance eligibility and employment should be strictly private.

In response to the concerns of the military family mentioned above, while such a condition wouldn't affect a security clearance, it might have another impact. It might make it difficult for a military member to accept certain overseas assignments - or to have to go on an unaccompanied basis - if the assignment is in a location that doesn't have adequate support for the family member. These days, for career advancement certain types of assignments are standard and not having them could seriously impact a career.

Mary