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."

Comments

Why wait for birth?

[fezzzz]

http://www.genetica.com/GeneticaWebV2.nsf/XPrenatalDNAPaternityTest.xsp

Re:Why wait for birth?

[ShanghaiBill]

Yes, it seems silly to wait till birth. That is too late to deal with many genetic problems. With earlier testing, the parents will also have the option of aborting if the genetic problems are severe. In days gone by, prenatal testing, such as amniocentesis, was invasive and could cause problems. But there are now several non-invasive prenatal tests which employ DNA sequencing of fragments of fetal DNA in the mother's blood.

Re:Why wait for birth?

[killkillkill]

parents will also have the option of aborting if the genetic problems are severe

Or minor. Or because it's a girl.

Re:Why wait for birth?

[Anonymous Coward]

parents will also have the option of aborting if the genetic problems are severe

Or minor. Or because it's a girl.

And aborting because the child is a girl requires a genetic test now? Get your slippery slope bullshit out of here.

Re: Why wait for birth?

[nbritton]

Or minor. Or because it's a girl.

It's their body, they should be able to do whatever they want with it. We should stay out of the affairs of others.

Re: Why wait for birth?

[killkillkill]

I'm certainly against eugenics on a government level, as it usually doesn't end well for minorities. I don't know how I feel about it on a personal level. Also, at some point it becomes their body as well as the body of another.

Re:Why wait for birth?

[Feyshtey]

It's not a slippery slope. It's a reality. The world has moved significantly down the road of choosing which lives are worthwhile, and which are just too big of a hassle. The scope of the lives that are ended broadens every year rather than narrowing, and correlates closely to the entitlement and selfishness of those choosing.

People who abort because they dont want to deal with a child who has special needs are not uncommon. Girls are aborted because their less valued. Now lets ensure that every parent knows the color of their child's hair and eyes, skin tone, temperment, susceptibility to cancer or the flu or the common cold. The shape of the child's head, or if they are genetically likely to have birthmarks, or maybe just be ugly.

Are you honestly going to argue that there are not people shallow enough to abort a baby because they dont want to have an ugly kid?

Re:Why wait for birth?

[ShanghaiBill]

Because we only have half of the world using these tests now to abort girls.

It is no where near "half the world". Even in China, the gender imbalance may be overstated. Many girl births are not reported. Some provinces offer incentives to encourage more girls, such as relaxing the "one child policy" if additional children are girls, so it effectively becomes a "one boy policy".

The root of the gender imbalances are cultural problems. Most Chinese lack pensions, and need a son to care for them when they are old (a daughter traditionally cares for her husband's parents). Some regions of India have even more of a gender imbalance than China, and a major reason for that is the dowry system that can bankrupt a family with multiple daughters. Reliable pensions and discouragement of dowries seems like more effective policies than government control of uteri.

Can't wait till that gay gene gets found.

Suppose that this happens. Some hetero couples will supposedly prefer hetero kids. But gays may prefer gay kids (whether through birth, adoption or surrogates). So the number of gays may not change much, but they would be more likely to be born into families where they are accepted.

Re:Why wait for birth?

[WOOFYGOOFY]

It's not a slippery slope. It's a reality. The world has moved significantly down the road of choosing which lives are worthwhile, and which are just too big of a hassle.

What? As opposed to what earlier time? 1100AD? Earlier? Later? 1500AD? 1700 AD? Oh I see, you are only talking about post-slavery days.. so 1900 and beyond.. back during the bright, human rights upholding days of the industrial revolution with, you know child labor and no sufferage.. oh you mean later than that? About when Civil Rights became a *thing*. ?

No later than THAT? Jesus buddy, we're running out of room on this end of history.

Fuck.

 

Re:Why wait for birth?

[Feyshtey]

Allow me to clarify for the deliberately obtuse: The world has moved significantly down the road of choosing which unborn lives are worthwhile, and which are just too big of a hassle.

Re:Why wait for birth?

[Immerman]

I was under the impression that there was a fairly simple amniotic fluid test which reveals gender. I could be wrong, but it seems to me that even if you have to resort to a genetic sample it still doesn't require DNA analysis, just a much simpler check for the existence of a Y chromosome - something that was discovered long before we even had the capacity to read the DNA itself.

Re: Why wait for birth?

[Immerman]

My first impulse is to agree, though I do suspect personal eugenics will end up leading quite rapidly (within a few generations) toward a perfectly reasonable discrimination against the poor as the wealthy pre-screen their children for defects, intelligence, beauty, etc, etc ,etc. In essence creating a race of supermen. Probably less ugly up front than government eugenics, but the long-term social fallout could be quite nasty.

On the other hand it also seems like one of the least-ugly routes towards taking a hand in our own species evolution. Seeing how as we've largely eliminated death as an evolutionary pressure in the developed world that tends to make the primary pressure being towards whoever has the most kids, and as a rule that's not exactly fostering our best and brightest, which in the extreme long term is likely to have it's own rather dismal consequences.

Re:Why wait for birth?

[ShanghaiBill]

Allow me to clarify for the deliberately obtuse: The world has moved significantly down the road of choosing which unborn lives are worthwhile, and which are just too big of a hassle.

So? To me this sounds like a GOOD THING. Too many children are born for the wrong reasons (family pressure, no contraceptives available, condom broke, drunk teenagers fooling around). More deliberate planning could only help.

Re: Why wait for birth?

[ShanghaiBill]

... discrimination against the poor as the wealthy pre-screen their children for defects, intelligence, beauty, etc, etc ,etc.

An abortion costs a couple hundred bucks, and is far cheaper than a live delivery. Genetic sequencing is falling in cost at an exponential rate. There is no good reason to believe that genetic screening will only be available to "the rich". Plus society as a whole benefits when fewer sick or retarded people are born, so there will be pressure to make these services widely available.

Re:Why wait for birth?

[Carnildo]

You wait until birth because in-utero DNA sampling carries a risk of miscarriage or birth defects.

Re: Why wait for birth?

[killkillkill]

there will be pressure to make these services widely available.

And now we're back to government sponsored eugenics.

Re: Why wait for birth?

[Cardcaptor_RLH85]

The problem with your statement is the fact that, until a certain point in gestation when the fetus is capable of living unsupported by its host, a fetus is simply a parasite living off of said host for a number of months until birth. I can't bring myself to grant the full rights of personhood to a being who literally draws all of its oxygen, water, and food (not to mention waste processing) from another living being without giving its host a say in whether or not she wishes to remain a victim of parasitism. Now before anyone posts trying to 'remind' me that I was the same way, yes, I was also a parasite in my mothers body for a significant fraction of a year. She chose to allow me to remain there, causing all sorts of physiological issues, until I was done gestating. That was her choice and I don't want others to be denied theirs.

Re: Why wait for birth?

[ShanghaiBill]

there will be pressure to make these services widely available.

And now we're back to government sponsored eugenics.

Available != Mandatory

Re:Why wait for birth?

[WhiteDragon]

I was under the impression that there was a fairly simple amniotic fluid test which reveals gender. I could be wrong, but it seems to me that even if you have to resort to a genetic sample it still doesn't require DNA analysis, just a much simpler check for the existence of a Y chromosome - something that was discovered long before we even had the capacity to read the DNA itself.

However, for most cases, ultrasound is much preferred to drawing amniotic fluid (amniocentesis) due to the risk of introducing infection.

No.

[some old guy]

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.

Re:No.

[Joce640k]

If no compelling medical issue requires sequencing in a newborn, it is invasive and coercive to conduct it.

Why? They might have some genetic problem which will appear later in life.

The real problem isn't the medical implications, it's the fact that we know the government is going to want a copy of the data (for the baby's own protection, of course...)

Re:No.

[daniel.garcia.romero]

http://en.wikipedia.org/wiki/Gattaca

Re:No.

[Anonymous Coward]

The question really is: Is there a compelling medical reason to sequence a newborn?

I know the VA was looking into the possibility of sequencing all military personnel. The idea was if military personnel had it coming in, then it could be analyzed and they could start predicting which medicines would work well for that person and which wouldn't. To have that all known upfront could make battlefield medicine a whole lot more effective, reduce the chances of allergic reactions, and provide better care.

In some situations they do it now and it does lower costs by allowing them to avoid ineffective drugs for that person. There's still a lot to learn and obviously a lot of drugs they have no idea what the impact is. Since the federal government doesn't have to pay the portion of fees that covers intellectual property if the federal government funded the research, they think this could save a ton of money.

Incidentally, when ObamaCare was being debated, most of the people I know familiar with this hoped that health insurance would be nationalized (for other reasons), but a convenient side effect would be it would quickly be cost effective to sequence the average American's DNA allowing them to provide better care.

Obviously there are huge privacy and discrimination concerns, but there is a real possibility for a medical benefit so I think there needs to be some debate.

Re:No.

[Anonymous Coward]

You worry about insurance companies getting accurate data so that they can compute the true cost of the risk that a customer carries. If you feel that isn't appropriate, then what you want is not insurance. Insurance is the pricing of risk. What you want is pooled expenses, which is what government programs is about - despite the wide-spread misunderstanding, that's not the service that insurance is supposed to offer. Insurance prices your individual risk while pooled expenses lets everyone pay for other people's risk. The two are fundamentally different. If you oppose giving insurance companies accurate information, then you are saying, whether you know it or not, that you don't want health care to be handled using an insurance model - you want a government solution using pooled expenses. Which would also solve your problem of worrying about insurability.

Re:No.

[Thanshin]

No, the problem is that there is no mechanism to punish the government when it does such stuff, other than revolution.

That mechanism has to be created.

Re:No.

[FireFury03]

If no compelling medical issue requires sequencing in a newborn, it is invasive and coercive to conduct it.

What if the baby might have some condition that is better treated as early as possible? Does that not count as a "compelling medical issue"?

Are blood samples not already taken from newborns anyway? If so, genetic testing doesn't seem any more "invasive".

However, I agree that indeed my concern is that the data will be kept on file and used for purposes other than medical treatment - I like the idea of the medical profession having lots of genetic data on file; I don't like the idea of the government (and by extension, police, security services, insurance companies, etc.) having that data.

Re:No.

[CimmerianX]

Problem there is even if the current government doesn't allow 3rd party access to the DNA database, would the next congress/administration share the same vision? How long until someone decides its ok for 3rd party researchers to access the data for 'medical study'? How long until the massive lobbying dollars start flowing in from insurance companies in order to 'change opinions' to help ins companies better manage risk? And so on and so on. Welcome to Gattica.

Re:No.

[FireFury03]

Problem there is even if the current government doesn't allow 3rd party access to the DNA database, would the next congress/administration share the same vision?

Indeed. I would be happy for DNA to be sequenced at birth, analysed for any conditions that need immediate treatment, and then the only copy given to the parents for safe keeping (not that I think the general public are especially good at doing the "safe keeping" thing, unfortunately). Keeping all the data in a database is problematic for exactly the reason you state.

How long until someone decides its ok for 3rd party researchers to access the data for 'medical study'?

For *actual* medical studies, this is pretty good - if you can provide the anonymised DNA sequence along side anonymised medical records then that gives the bioinformatics people a hell of a lot of data they can statistically analyse - that's the kind of thing that would probably greatly advance knowledge about what conditions are caused by what genetic sequences. The problem with this, of course, comes back to the fact that in order to generate this anonymised data, you probably need a non-anonymised database of it all somewhere, which could be abused.

Re:No.

[Anonymous Coward]

Insurance is the pricing of risk.

Insurance is the pricing of what people can be convinced is reasonable pricing given the risk--which they by design can't evaluate. In reality, the insurance companies trend toward taking no risk whatsoever, as the risk model trends to sufficiently comprehensive to quantify and build into the price all risks plus an arbitrary profit. Eventually, along this track, insurance becomes simply a savings system for the risk eventuality which is statistically simply a very bad investment system for an individual to choose.

That notion that insurance companies "fairly" charge individuals according to risk is simply a convenient lie. They charge as much as they possibly can in every given case, limited only by individuals' perceptions of "fairness" and willingness to switch to a competitor. That's how capitalism actually works, fanciful advertisement stories of how insurance companies are "there for you", in some kind of altruistic fashion, aside. This is demonstrated by recent studies showing that safe drivers are often charged more than unsafe drivers--the precise opposite of any supposed correlation with fairness or risk. It is simply the case that safer drivers tend also to be wealthier, and being wealthier, are less likely to be concerned enough about increasing rates to switch to a competitor. The insurance companies are well aware of their methodology, and that their natural objective would be to offer no actual benefit whatsoever in exchange for the dollars charged, and increasingly-accurate modeling allows precisely that--unfortunately, the public tends not to understand and is easily filled with a sense of warm fuzziness in being in "good hands".

Re:No.

[Jiro]

If the fire insurance company could predict that your house would burn down, costing $300000, they'd charge you $300000 plus profit, and fire insurance would be totally useless. Contrary to what you are saying, pooled expenses is the only reason that insurance is useful at all.

Re:No.

[Jiro]

Indeed. I would be happy for DNA to be sequenced at birth, analysed for any conditions that need immediate treatment, and then the only copy given to the parents for safe keeping (not that I think the general public are especially good at doing the "safe keeping" thing, unfortunately).

That doesn't solve the insurance problem. The insurance company would demand disclosure of the DNA and use it to deny coverage or charge more. Just the fact that you have the information sitting in your drawer would be enough for this. If you don't have it, it's much harder for the insurance company to demand it (although once it gets cheap enough I'm sure they'll try that too).

Re: No.

[nbritton]

I'll be damned if I want my grandchildren automatically genome-branded by the government to the detriment of their education, employment, and insurability.

No one wants the reality you speak of, we've already implemented laws to prevent this. The Genetic Information Nondiscrimination Act of 2008. Furthermore The Americans with Disabilities Act extends to individuals with genetic disabilities. Additionally affirmative action applies to any organization receiving federal funding.

Viruses and many other things can mutate DNA, I don't see a downside in making a backup copy of yourself.

Re: No.

[some old guy]

Oh, like the government actually obeys it's own laws? I almost spit my lunch laughing at that one.

Re:No.

[FireFury03]

That doesn't solve the insurance problem. The insurance company would demand disclosure of the DNA and use it to deny coverage or charge more.

That goes for any diagnostic tool that would spot illnesses in their earliest stages though doesn't it? What is needed is regulation of the insurance companys to reduce the scope of their discrimination.

If you don't have it, it's much harder for the insurance company to demand it

Or they will simply demand you get sequenced before giving you insurance...

Re:No.

[SuricouRaven]

Insurance only works because the company's predictive model is imperfect. The better their model gets, the less useful it is to the customers.

Re:No.

[SecurityGuy]

Good lord, this is horribly wrong.

The entire purpose of insurance is to pool risk, not price it. Pricing it is just part of the mechanics insurance companies have to go through to profitably allow us to pool risk. Let's say I have a 1% chance of getting in a car accident costing $100,000 this year. That would be ruinous for most folks, so we created companies that will take $1000 + some profit from everyone, every year and pay for the loss. We trade an unlikely horrible event for a guaranteed manageable one.

When we do it your way, it doesn't work at all. People who aren't going to need insurance will get it really cheap. People who do will be unable to afford it. The only way it works at all is either if you sign up before any risk assessments like this can be done, or you legislate boundaries into what insurance companies can use.

This is also not remotely a government problem. Government problems are and should be only those that can't be handled by the private sector. The private sector can handle this one just fine, we just need to tell them what data's off limits.

Re: No.

[Sarius64]

No one wants the reality you speak of, we've already implemented laws to prevent this. The Genetic Information Nondiscrimination Act of 2008. Furthermore The Americans with Disabilities Act extends to individuals with genetic disabilities. Additionally affirmative action applies to any organization receiving federal funding.

Viruses and many other things can mutate DNA, I don't see a downside in making a backup copy of yourself.

It would be fun to get my genetic profile and have it indicate that we are all African-Americans. Woot!

Re:No.

[Feyshtey]

That doesnt make any sense.

I can only translate what you're saying to mean that on the one hand that insurance is expensive because the company has to coverage its statistically imperfect prediction of it's costs. And on the other hand that has they perfect their prediction of their expenses they will charge the customers more?

Re:No.

[Dcnjoe60]

ncidentally, when ObamaCare was being debated, most of the people I know familiar with this hoped that health insurance would be nationalized (for other reasons), but a convenient side effect would be it would quickly be cost effective to sequence the average American's DNA allowing them to provide better care.

Nationalized healthcare/insurance ore even mandating private insurance cover it doesn't make it any more cost effective. It simply solves the problem of who is going to pay for it. If the process isn't cost effective or the cost benefit ratio is poor, nationalizing the payment doesn't change that.

Re:No.

[Dcnjoe60]

No, the problem is that there is no mechanism to punish the government when it does such stuff, other than revolution.

That mechanism has to be created.

That mechanism already exists, it's called a ballot box. However, it is often far too late for the people actually harmed by the government.

Re:No.

[JesseMcDonald]

What is needed is regulation of the insurance companys to reduce the scope of their discrimination.

Discrimination, at least insofar as it relates to risk, is pretty much the entire point of an insurance company. Assessing actuarial risk to determine the expected cost of insuring someone is fundamental to the job. If you want charity rather than insurance, just say so; please don't ruin actual insurance for those who want it.

Re:No.

[JesseMcDonald]

When we do it your way, it doesn't work at all. People who aren't going to need insurance will get it really cheap. People who do will be unable to afford it.

That is exactly how insurance is supposed to work. If you aren't high-risk, there is no reason for you to pay a lot for insurance. Conversely, if you are high-risk, you should pay more, because you're expected to cost more. Insurance isn't a charity or transfer scheme, it's a way to take a risk and make it into a fixed cost. Instead of a 0.1% chance of paying $1,000,000, you pay $1,000. The expected cost (risk * cost) does not change, apart from overhead.

The only way it works at all is either if you sign up before any risk assessments like this can be done ...

Exactly. The proper time to take out insurance on a child's genetics would be before the genetics are determined, based on the biological parents' risk factors. If you're a high-risk parent due to inheritable genetic factors you can either pay more for the insurance or consider e.g. adoption rather than passing on your own genes. The insurance should cover the total lifetime cost of treating any genetic disorders which are discovered. (This is part of the problem with "preexisting conditions": the original insurer should be on the hook for the total cost of treating anything discovered while you're a customer, not just the ongoing costs so long as you maintain your insurance.)

Re:No.

[Belial6]

With perfect risk assessment being possible, no insurance company would issue a policy until that assessment was done, and even if they did, once the assessment does get done, anyone that knows they are not at risk, will just cancel their policy once they know they are not at risk.

Re:No.

[Belial6]

Insurance is useless for those who don't have risk. Paying insurance to cover you against diabetes would be stupid if you could see through a DNA test that you will never get it.

Re:No.

[JesseMcDonald]

Insurance is useless for those who don't have risk. Paying insurance to cover you against diabetes would be stupid if you could see through a DNA test that you will never get it.

Exactly. Insurance isn't meant to cover those who without risk, any more than it's meant to cover those facing a known cost. It's for the cases in between, where you have a low risk of a high cost and would prefer a predictable premium.

Re:No.

[JesseMcDonald]

With perfect risk assessment being possible, no insurance company would issue a policy until that assessment was done...

Accurate assessment has a cost as well, both to perform the assessment and in losing customers who aren't willing to complete it. It is always possible to compensate for uncertainty in the assessment by assuming a higher level of risk, constrained on one side by the actual cost to the insurance company and on the other by competition for insurance customers. If insurance companies always waited for perfect information there would be no insurance companies.

... once the assessment does get done, anyone that knows they are not at risk, will just cancel their policy once they know they are not at risk.

In the pre-conception insurance policies I was referring to, I had in mind a single lump-sum payment rather than monthly premiums, so there would be no risk of anyone cancelling their policy once the know the results of the screening. That's how insurance already works for other one-time events, e.g. insuring your outdoor concert against poor weather. For those without the means to cover such a payment up front, it could be treated as a loan; the point is that the customer's entire obligation to the insurer is set in stone before the event, just like the insurer's obligation to the customer.

For more traditional medical insurance, I would think of the periodic premiums as covering the total cost of anything discovered during that particular period. If something is discovered and the customer subsequently cancels their insurance, that's fine. Even if they were only a customer for one month, their first month's premium covered the expected lifetime cost of anything new discovered during that month.

Re:No.

[FireFury03]

What is needed is regulation of the insurance companys to reduce the scope of their discrimination.

Discrimination, at least insofar as it relates to risk, is pretty much the entire point of an insurance company.

No, it isn't.

For the customer, excessive discrimination is a bad thing: if the insurance company can determine your risk with 100% accuracy then you are _guaranteed_ to be paying over what it would've cost to self-insure. So the higher the insurer's accuracy WRT discrimination, the worse it is for the consumer.

On the other hand, assessing risk accurately is very good for the insurance company, because out-pricing the customers who are most likely to need insurance and retaining those who don't need it is good for their profit margins.

Re:No.

[volmtech]

Things like fatty and sugar laden foods. Or dangerous possessions like guns and motorcycles. Or sedentary lifestyles, everyone forms up on the street for calisthenics every morning. I for one welcome our nanny overlords.

The paternity problem.

[Rande]

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.

Re:The paternity problem.

[Anonymous Coward]

It shouldn't be legally possible for a person to make a decision about whether to take on legal parental responsibilities while being possibly deceived about whether they are the biological parent. That situation is no different, not in any relevant way, than getting a switched baby home from the hospital - something everyone can obviously see is horrible when it happens to women. So automatic parental certainty as a consequence of such DNA tests isn't a problem - it's a solution to a problem.

Re:The paternity problem.

[staalmannen]

The scary thing is that such information is already now witheld from the fathers also when the results are negative in standard genetic screenings (genetic risk assessments, donor profile, ...). The positive part is that the frequencies are lower than commonly cited. http://en.wikipedia.org/wiki/Misattributed_paternity

Re:The paternity problem.

[Belial6]

Your are actually advocating the it is a good thing that women kidnap children from their fathers and trick other men into raising children that are not their own? You are one sick puppy.

USD25M for a study?

[Nutria]

How can a study of ethical issues cost that much?

Re:Are they collecting everything?

[Nutria]

given the NHS's catastrophic record for IT projects

Confusing NIH and NHS, which, besides being in different countries, have totally different missions?

Dematerialization

[stud9920]

why even take the baby home? Isn't the DNA sequence stored somewhere in the cloud equivalent ?

Re:Dematerialization

[aNonnyMouseCowered]

Maybe because a mom would much rather hold the baby in her hands than stare at its Matrix-y manifestation.

Inborn Errors of Metabolism testing.

[Guppy]

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.

Re:Are they collecting everything?

[Required Snark]

I misread it as NHL.

Re:Gattica

[wonkey_monkey]

It's Gattaca. No "I" for obvious reasons if you've seen the film (or at least the titles).

Gattaca

[worker17]

Looking forward, from the past. http://en.wikipedia.org/wiki/Gattaca

Re:Gattica

[oodaloop]

No "I" for obvious reasons if you've seen the film

Or know anything about DNA.

Yeah...Thansks but no thanks.

[Lord Kano]

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

Insurance company cheating?

[benjfowler]

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.

Re: Insurance company cheating?

[msoftsucks]

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.

Genetic database

[msoftsucks]

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.

Re:Are they collecting everything?

[K. S. Kyosuke]

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).

QED why this is a BAD IDEA

[RobertLTux]

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.

Re:QED why this is a BAD IDEA

[Mitchell314]

Wrong gender? Well, I guess it's a good idea that we have no way of knowing gender beforehand. Oh wait . . .

And for the other retarded reasons, besides the fact that you can't extrapolate a person from their genes. You can find likelihoods, but outside of a few exceptions your common physical and mental traits are at best very weakly tied to genes. Unless there's a glaring genetic disease, it's what happens in development that's driving common phenotypical differences. Sure, there're a few genes you can spot and make a conclusion, like skin/hair/eye color. Height is a bit messy. But as for intelligence and how the person overall looks or preforms, you might as well just take a look at the parents and guess from there.

Re:QED why this is a BAD IDEA

[SuricouRaven]

9. Excess chromosome, child will require extensive care for most of their life and is unlikely to reach independence.
10. Child will be healthy until around the age of fourty, then rapidly lose mental faculties and be reduced to continually asking why their dead wife doesn't come to visit the care home.
11. Child has no immune system, and will require constant hospital care for the few years they survive.
12. Cystic fibrosis. Survival to adulthood is possible, but not without constant and very expensive medication and care that would bankrupt most families.

The nazis gave eugenics an image problem. That doesn't mean it's always a bad idea.

Re:QED why this is a BAD IDEA

[ShanghaiBill]

1 wrong gender

Gender can be determined with ultra-sound. No DNA testing is required. Gender imbalances are bad for society, but gender selection is not inherently bad if it balances out. Some Asian cultures prefer sons, but Caucasian mothers undergoing IVF are more likely to prefer daughters.

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

Unless it is your kid, I would say that none of these considerations are any of your damn business.

i could go on but the real Evil would be when gene editing is possible.

Just because you saw something portrayed as "evil" in a movie, does not make it evil in real life. Gene editing should lead to a healthier and smarter population. Why is that "evil"?

Re:QED why this is a BAD IDEA

[Immerman]

Don't mistake "we don't know how to read" with "it hasn't been written". To use your example of intelligence: aside from a few contributory genes it's true, we don't understand how intelligence is genetically encoded. But the fact that you can look at the parents and make a good guess shows that there *is* a strong genetic component, children are not a blank slate, and eventually we'll (presumably) learn to read DNA well enough to understand it.

  At present we're not even at the Dick and Jane reader level of comprehension - we kind of understand a few key words here and there, mostly stuff tied to really obvious abnormalities, but with essentially no comprehension of how it all works together. Eventually though we'll have a much better understanding, it's probably not even all that far off, so discussions such as this are important to have now, before we actually have such tempting technology in our hands.

Re:QED why this is a BAD IDEA

[Immerman]

> Gene editing should lead to a healthier and smarter population. Why is that "evil"?

I would say it's not, inherently. However the reality is that such technology is likely to be far more accessible to the rich than the rest of us - initially they'll be the only ones who can afford it, and going forward they will still be the ones who can afford the more extensive/valuable cutting-edge gene mods. The almost inevitable result will be a race of supermen who are objectively better than the rest by almost any metric you care to use. And that will be evil if you are of the opinion that a measure of social equality is a good thing. Just look at how ugly racism and classism has been in a world where the underlying reality is that the differences are primarily cosmetic or cultural - how much worse could it be in a world where the rich, powerful people really *are* consistently, measurably, better than the rest of us?

Re:QED why this is a BAD IDEA

[ShanghaiBill]

The almost inevitable result will be a race of supermen who are objectively better than the rest by almost any metric you care to use.

This would be a great plot for a Hollywood movie, but otherwise has little connection to reality. There is no good reason to believe that genetic mods will be particularly expensive. We already produce trillions of genetically modified soybeans. The soybean genome is no less complex than the human genome. Since the cost of the mods will be far less than the cost of raising a defective child, they should be covered by most insurance plans. Everyone who wants an enhanced child will get one.

Re:QED why this is a BAD IDEA

[yndrd1984]

We already produce trillions of genetically modified soybeans.

Well, we produce trillions of descendants from a few dozen soybeans that had their genes modified. We're not exactly tweaking every bean.

The soybean genome is no less complex than the human genome. Since the cost of the mods will be far less...

The complexity of the genome isn't much of an issue when you're just inserting a gene, swapping out a gene is likely to be much harder.

Plus, when you screw up a few soybeans, there's no moral pressure to keep it alive, nobody sues you, and your entire industry doesn't get banned.

promise vs ethical challenges

[PopeRatzo]

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.

Re:Gattica

[wonkey_monkey]

You'd also need to know that movie is about genetics, and even then it'd be a bit of a leap to infer that the I in Gattica was a typo.

sequence blastocyst before implanation

[peter303]

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.

Re:Are they collecting everything?

[LordLimecat]

How obviously reasonable medical regulations

I think we disagree on what constitutes obviously reasonable. I have a strong aversion to ANY government mandated medical procedure; vaccinations have a teensy bit of justification because that directly affects the welfare of those around you, but theres no such grounds for justifying mandatory genome sequencing.

"liberalism" or "non-liberalism"

Liberalism tends to support the idea that we must work together to solve the world's problems, usually manifesting as requiring cooperation through laws in order to approach an ideal. Non-liberals tend to reject that sort of thinking, supposing instead that individual freedoms are the only possible way to constrain the natural human tendency to abuse power and commit evils.

Whether you are liberal or not is ABSOLUTELY relevant to how one would feel on this issue.

Expungement of DNA from arrestees

[davidwr]

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.

Invidivual vs. population and genetic monoculture

[Prune]

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).

Re:Are they collecting everything?

[Sarius64]

If it's so obviously reasonable how come someone (like you) doesn't reasonable volunteer to reduce the population?

Re:NIH Studies Universal Genome Sequencing At Birt

[Sarius64]

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.

Re:Are they collecting everything?

[Feyshtey]

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.

Re:Are they collecting everything?

[Dcnjoe60]

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).

If the data isn't going to be stored, then why use it? Sure, you will know your genome (unless you lose it), but why should the government mandate this. You can go pay for it and get it done now. No, the only reason to do it to everyone is so it is stored and tracked, either for future research purposes, or more sinister reasons.

Re:Are they collecting everything?

[K. S. Kyosuke]

vaccinations have a teensy bit of justification because that directly affects the welfare of those around you

And so would genetic screening and counseling in my country, seeing as the state is obliged to provide people with health care, and looking for risk factors is quite an obvious way of reducing health care costs - or improving the overall quality of life for fixed costs - in the long run. The same argument goes for vaccinations, of course.

Liberalism tends to support the idea that we must work together to solve the world's problems

Oh, it doesn't do any such thing - unless you're a US Republican, you know, one of those people known for their mind-boggling ideas, notions, and idiosyncratic terminology.

Re:Are they collecting everything?

[K. S. Kyosuke]

If the data isn't going to be stored, then why use it? Sure, you will know your genome (unless you lose it), but why should the government mandate this. You can go pay for it and get it done now. No, the only reason to do it to everyone is so it is stored and tracked, either for future research purposes, or more sinister reasons.

It's obviously going to be stored somewhere precisely because you will want to use it - I've said that you will have your own data, not that the sequencer's output will be permanently redirected to /dev/null. As far as the reasons are concerned - no, the real reason is that the more we'll know about genetic precursors for diseases, the more targeted health care we'll be able to provide to people and the cheaper the overall costs will be. Truth is that right now, we can do only fairly simple things - detecting genetic precursors for some kinds of cancers and some neurodegenerative diseases, for example. But the more we'll know about how our bodies work, the more likely it will be that having a full genetic make-up of an individual will be useful to look for warning signs in advance.

Insurance

[Immerman]

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.

Re:Insurance

[Feyshtey]

Ah, I understand now. When you said the company's predictive model I read it as their prediction of their overall costs. But you actually mean the medical industry's predictive model based on a person's genome.

Re:Are they collecting everything?

[LordLimecat]

seeing as the state is obliged to provide people with health care,

No, it is not. I am unaware of any such obligation; the mere requirement in Obamacare that you have healthcare was fought heavily in court, and was ONLY ruled constitutional by excusing it as a tax (pay a penalty if you do not). That the state actually be required to insure you is about 10 steps beyond that and would surely have been ruled unconstitutional.

Are you even from the US? If not, perhaps best not to comment on our system of government, as you clearly dont understand it.

Re:Are they collecting everything?

[K. S. Kyosuke]

No, it is not. I am unaware of any such obligation; the mere requirement in Obamacare that you have healthcare was fought heavily in court

I wrote "in my country", quite clearly, actually. Perhaps you live somewhere else? Or you simply think that Obamacare applies to European jurisdictions - apparently, many Americans would want their legislation to apply world-wide, going as far to stage coups and military interventions, but I hope there's not enough stupidity in the world to allow for that.

Are you even from the US? If not, perhaps best not to comment on our system of government

No, I'm not, and I'd never comment on that because obscenities are generally frowned upon in the public forum. Fortunately, this is a medical and scientific issue and has nothing to do with government (save perhaps for those cases where the idiots in power start considering themselves better experts at subject matters for which there are perfectly serviceable professional bodies with actual authorities on the matter - just look at how that pathologically lying scumbag Scalia obstinately refuses to accept the very existence of APA's studies and reports!), so there's no need to pull politics into it. So is the economic aspect of the whole thing: prevention and timely diagnosis makes improves health care regardless of who won the last elections - wherever you live, so again, no need to pull politics into that. You wouldn't make it a political issue whether people should have electricity and running water either.

Re:NIH Studies Universal Genome Sequencing At Birt

[yndrd1984]

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.

Re:Are they collecting everything?

[flyneye]

"Why would universal sequencing imply a database? "
Because they can and do collect any information on anybody. Right now it's big with law enforcement( called just sticking the head in).
Next there will be a medical " need" for everyones genes and the doors fly all the way open for any corrupt "reason" to utilize this from faux disease curing to
hybridizing only perfect humans and any other garbage you can think of with the tagline "for the good of mankind" while meaning "good for those in power".

No, it's a bad idea. I stand behind that.

"I have yet to see "liberal" and "non-liberal" doctors "

I have yet to see doctors WITHOUT a political leaning or opinion on the subject. Are you on some south Pacific island?
Sometimes money saving and shortcuts to an end are the worst solution.

Re:Are they collecting everything?

[volmtech]

But the government can mandate that everyone else who uses the emergency room you staggered into is required to help pay your bill if you can't.