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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
So, given the NHS's catastrophic record for IT projects, how do we know that they won't fuck this up?
We know that in the UK at least, public procurement projects are really nothing more than a trough for greedy well-connected insiders to gorge themselves on public money. BT, CSC, Fujitsu and friends buggered the taxpayer absolutely rotten (to the tune of £12 BILLION), the last time they were allowed to get their grubby mitts on publicly-funded IT projects, during the Connecting for Health catastrophe.
Additionally, how do we know if the gene sequence data collected is sufficient to be useful in the future? Current sequencing methods _do_ have limitations, and not everything can be sequenced. Even though the cost of sequencing a genome is crashing through the floor, how are they convinced this isn't a waste of money?
Just the beginning.
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.
How can a study of ethical issues cost that much?
"I don't know, therefore Aliens" Wafflebox1
why even take the baby home? Isn't the DNA sequence stored somewhere in the cloud equivalent ?
On the slippery slope to Gattica...sigh...it seems inevitable...
https://en.wikipedia.org/wiki/Gattica
This is great news. There is no chance that this database of DNA could ever be stored and misused by the police / government is there.
Worse still, they it gets sold to marketing companies like every other database and we get targeted marketing based on our genes.
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.
Looking forward, from the past. http://en.wikipedia.org/wiki/Gattaca
...has an interest in keeping the other half in the dark as to who the father really is.
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
What's probably more important, is not that the information is being collected (it has many uses), but that greedy and unethical insurers (especially those who don't get the "pooling risk" part), who will game, cheat and generally be scummy, by refusing to insure people (or charging higher premiums) for people with certain bad genes.
Private health insurers are generally greedy fucksticks who are happy to charge exorbitant amounts of money for a rubbish product, and are quite happy to use any means to ignore the fact that they're being paid to pool risk, and cheat their customers.
Maybe this cloud has a silver lining -- if the "free" market destroys itself through genetic discrimination (as tends to happen), then universal health coverage (or at least single-payer insurance) in the US, could become a reality.
Universal?
I suppose NIH is the National Institute of Health or something like that? Wouldn't that be country-wide genome sequencing, or possibly state-wide genome sequensing?
Global: The entire planet, including China, Russia, Saudi Arabia and Iran.
Solar System Wide: The above, plus Martians and the people living on Europa (the moon).
Universal: The above, plus everyone in the Andromeda Galaxy, The Protoss and possibly the Zerg.
Who believes anything else ?
(well, maybe not straight, it may go via NSA backdoor, but go it will)
"We have your new sons Genome sequenced, sir. As you can see here, he's got an IQ of 200, he's likely to receive several Nobel prices in his life, and earn a couple of billions per year."
"Sounds great, finally someone in the family will be able to make it"
"He's also gay"
"Guys... Get the rope and light a cross on fire."
Here's a simple solution, give the results to the parents and let them decide what to do with the information. Require (by law, with criminal penalties) that hospital/testing facility destroys all copies on their side within a month or so after giving a copy ONLY to the parents. Also make it illegal to require the parents give up the results, doctors and insurance companies can REQUEST them but cannot require them in any way, shape or form. If the parents do choose to give the insurance company/doctor a copy they are bound (again, with criminal penalties) by law to not distribute them to any other party. Maybe its crazy, but I've often though it would be a good idea to require doctors/hospitals/insurance companies to provide records directly to patients through some kind of hardened flash card, if you ever want to change doctors or get a second opinion you just take your card to another doctor and they have your full medical history at their fingertips. Again, by law they would be forbidden to distribute those records, maybe the card could even be rigged to not allow copying except where the patient provides some kind of authorization password.
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.
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.
Theres a new IVF technique that creates a dozen embryos, lets them grow a few days, then selcts most vigorous one. At this stage losing one nucleus to testing is not a problem. If one could sequence and analyze in hours, then this may become part of IVF.
Is the funding surreptitiously supplied by NSA?
"I belonged to a new underclass, no longer determined by social status or the color of your skin. No, we now have discrimination down to a science."
Fun times...
Some states allow arrestees who are no longer facing charges to get their entire arrest record expunged or sealed, including fingerprint and DNA test results. Typically they have to wait until charges have been dismissed "with prejudice" or until the statute of limitations has expired, which is usually 3-10 years for low-level felonies and up to "never" for murder and some other high-level felonies.
Granted, this isn't as good as having the information destroyed entirely, but it's a start.
Knowledge is how to play a game, intelligence is how to win, wisdom is knowing what game to play.
Most prospective parents would be inclined to select for similar traits. When this is done on a large scale, it would lead to decrease in human genetic diversity. Now, to anyone familiar with agriculture, the danger of monoculture is well known. This is not viable in the long term, and in a dynamic environment is likely to eventually lead to extinction. This is not to say we shouldn't use some level of artificial selection, but it is very important that it's done carefully and is globally coordinated, with attention given not just to individual preferences, but also the potential deleterious effects on the future human gene pool.
A classic example is the HBB->HbS mutation, which is common in some populations in malaria-heavy regions. If you get a copy of the mutant gene from both parents, you get sickle cell anemia. A perfect target for our would-be eugenicists, right? In the heterozygous case, however, where you get one copy of the mutant gene and one normal one, you get protection from malaria.
As an aside, screening should be done as early as possible, as with many genetic diseases there is no practical treatment (and there won't be any time soon), and abortion is the only alternative. Preferably, it should be done before the brain regions correlated with consciousness develop in the fetus (while consciousness' neural correlates are not particularly localized, certain regions discovered by Damasio et al. are required--for example, the anterior cingulate cortex).
"Politicians and diapers must be changed often, and for the same reason."
Let's think this through one better -- Your child is born with a specific sequence the government determines is necessary to national defense. Mind powers, whatever. Baby disappears that day.
collected and 'provided' at birth. your privacy gone. your World ID identified, recorded and associated with you and your parents
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.
If the government is 'disappearing' babies on a large scale, for any reason, I don't think the privacy of genetic information is your biggest problem.