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NIH Studies Universal Genome Sequencing At Birth
sciencehabit writes "In a few years, all new parents may go home from the hospital with not just a bundle of joy, but with something else—the complete sequence of their baby's DNA. A new research program funded at $25 million over 5 years by the National Institutes of Health (NIH) will explore the promise—and ethical challenges—of sequencing every newborn's genome."
http://www.genetica.com/GeneticaWebV2.nsf/XPrenatalDNAPaternityTest.xsp
If no compelling medical issue requires sequencing in a newborn, it is invasive and coercive to conduct it.
Any possible beneficial result is overshadowed by the inevitable abuse and misuse of the results. All I can see is creating a brand for each new child that will influence and determine decisions that may in fact have no significant scientific bearing. Predisposition is not certainty, and decisions based on uncertainty are, well, stupid.
I'll be damned if I want my grandchildren automatically genome-branded by the government to the detriment of their education, employment, and insurability.
Scruting the inscrutable for over 50 years.
The problem of the screams and arguments when the father finds out at the hospital that the child isn't biologically his.
Even 1% will mean that the report won't automatically be given to the parents, or perhaps only a synopsis.
The article linked briefly mentioned the existing newborn screening program (Inborn errors of metabolism screening), but I'd like to discuss it a bit further. This is a long-existing program in the US which is administered at the state level, which means the particular regulations and included diseases vary; some states have far more extensive testing than others.
The program is mandatory (usually with some form of parental opt-out), and checks for certain rare genetic diseases, the proto-typical example of which was phenylketonuria -- a metabolic defect that will lead to seizures and mental retardation if allowed to progress, but if treated early (by adhering to a strict diet) will allow a for a relatively normal level of intelligence and life-span. As time and medical understanding progressed, numerous other diseases have been recommended as well:
http://www.acog.org/Resources%20And%20Publications/Committee%20Opinions/Committee%20on%20Genetics/Newborn%20Screening.aspx
From a public health perspective, one issue is that the cost of the program has to be balanced against the relative benefit; since each new test added is state-wide, the cost quickly adds up. And, everyone likes saving babies (especially disease-specific foundations, lawyers, and politicians), there's pressure to add conditions which are extremely rare, to the point that one additional "saved" baby can cost multi-millions of dollars.
While a sequencing at birth could potentially replace most of these individual tests, there's quite a bit of scope for feature-creep as to what is required to be done with the data afterwards. I could see this becoming very expensive indeed.
I misread it as NHL.
Why is Snark Required?
No "I" for obvious reasons if you've seen the film
Or know anything about DNA.
Tic-Tac-Toe, Global Thermonuclear War, and relationships all have the same winning move.
I'm not having my children's DNA available to be cataloged and searched by anyone. I'll let them decide that when they're adults.
LK
"Hi. This is my friend, Jack Shit, and you don't know him." - Lord Kano
In NY state, in many others and in cities around the world, DNA is taken from you when you are arrested. It doesn't matter if you are innocent or if the charges are misdemeanors, your DNA is placed in a database and will never be removed. In NY, Murdoch's education initiatives are already sequencing all children that are in public school. Just like the DMV selling your private info, Murdoch has made deals with insurance carriers to sell them this sequence data. If your DNA is sequenced it will be used against you in ways that you will never know. Gattaca is already here.
Quit playing Monopoly with Bill.
Linux - of the people, by the people, and for the people.
So there will be a universal database of sequenced genomes from this generation, on
Why would universal sequencing imply a database? You can get it on a media the same way you get a birth certificate. If you lose it, your problem (at least the genome can be re-sequenced, unlike other kinds of medical records).
It will be supported by liberals to "save the children"
How obviously reasonable medical regulations and procedures correspond with "liberalism" or "non-liberalism" is beyond me. I have yet to see "liberal" and "non-liberal" doctors - so far, I haven't seen any such dichotomy in my country. Doctors around here seem to be very uniform in how they deal with their work (which could be an artifact of our socialistic past, but still, I just can't see any one of them rejecting useful and money-saving preventative measures).
Ezekiel 23:20
If this can be used to decide to ABORT a child then this is a bad idea.
gene markers that could be used to decide that a child needs to be aborted
1 wrong gender
2 not smart enough
3 not athletic enough
4 wrong eye/hair color
5 not "pretty enough"
6 Gay/Not Gay
7 wrong skin color (bonus reason for Mixed Parents)
8 Voice not Right
8 wrong body build
i could go on but the real Evil would be when gene editing is possible.
Any person using FTFY or editing my postings agrees to a US$50.00 charge
Who wants to bet they're going to spend a lot more time and energy on the "promise" than they will on the "ethical challenges"?
How did our species survive so long without this innovation? We better get right on this.
You are welcome on my lawn.
This is already happening. I have a cousin who was arrested a couple of years ago participating at a demonstration. A cheek DNA sample was taken at booking time. She recently applied to get a pricier health care plan and was denied. She didn't understand why considering it was with the same insurance carrier and hadn't used her existing policy much. They wouldn't tell her when she pressed them on this issue. She decided to sue, and in discovery it turns out they had obtained her DNA sequence under the guise of "medical research". The case officer in charge of approving her application had seen this info and decided to reject it because she had tested for two faulty copies of the BRAC2 gene which raises her chances of getting cancer significantly. The insurance company eventually backed down, and my cousin was able to get the plan she wanted. But, to how many others is this happening? What other conditions are they filtering out for? Who knows. But it is quite clear that this is just going to expand. There is an ulterior motive for building these DNA databases and we are just pawns in the big picture.
Quit playing Monopoly with Bill.
Linux - of the people, by the people, and for the people.
Why would universal sequencing imply a database?
Exactly. That's like saying just because the NSA is collecting email and phone logs they are also indexing it all and searching for patterns and... Shit... Nevermind.
Oh, right, that's because thats to protect us. It's not like sequencing every kid's DNA is going to be used to correlate behavior to genetic traits and... Shit.... forget I said anything.
"But we have to pass the bill so that you can find out what is in it,..." - Nancy Pelosi
The initial example captures it quite well, but let me break it down for you:
Insurance companies are in the business of making money, they do this by charging you more than they ever expect to pay out. If they could predict the future with 100% accuracy then they would charge you a rate at which they would collect 100% of the expenses you will incur, plus profit.
Since they can't predict that accurately they instead spread the risk around - if everyone has an unpredictable 5% risk of incurring $100,000 in covered expenses, then they will charge everyone a rate that nets them 5%*$100,000 = $5000 per person, plus profit. 19 out of twenty people pay for nothing, and the twentieth collects. But since you don't know beforehand whether you're going to be one of the nineteen who lose out, or the twentieth who "wins", you go ahead and pay so that you don't end up being stuck with the $100,000 bill yourself.
As risk assessment gets more accurate they can charge the high-risk people more and more and, ideally, the low-risk people less and less. The better the prediction the closer everyone gets to paying for all their own expenses, plus the profit of the insurance company, and the less point there is to buying insurance at all. You could just pay into a savings account instead and keep the profit portion for yourself.
--- Most topics have many sides worth arguing, allow me to take one opposite you.