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Two Companies Now Offering Personal Gene Sequencing
corded writes "Yesterday, deCODE genetics announced the launch of their $985 personal genotyping product, deCODEme (video), beating their competitors to market. Perhaps not coincidentally, 23andMe's website is suddenly much more informative today, and the New York Times features a preview of 23andMe's $999 offering. deCODEme and 23andMe will scan about a million and 600,000 sites across the genome, respectively and assess your risk for common diseases, along with providing information about ancestry, physical traits, and the ability to compare genes with friends and family."
I wouldn't do this until some law is passed saying that if a test shows I am prone to some genetic condition that the insurance companies can't refuse me service because it is a pre-existing condition. Ignorance is financial bliss.
Ascii artist &
What about privacy ? How could one be sure that they don't keep the records in some kind of database ? The possibility to make comparisons with friends/family seems like a pretext to keep that kind of data.
What about the genetic information that cannot be interpreted as of today ? Will it get stored anyways, leaving future analysis possible ? (Is there a subscription for updates ??
What kind of questions these sort of tests can answer that you can't answer ? Besides disease detection (I thought there were people specialized in such matters ... like ... doctors ...), what purpose serve the answers ?
People in past discussions mentioned this, but the ability to compare genes with family members may shock more than a few people who do not share as many genetic characteristics with their father and siblings as they thought. Apparently, estimates of conceptive infidelity place the natural rate at a much higher percentage than actually known to the conceived children.
Is this anonymous? Namely so that if it turns out I have some risk factor for a genetic condition, that my health insurance can't find out about it and raise my premiums.
Things you think are in the Constitution, but are not.
This is great! But who owns the code? The NY Times article says that you aren't given your code, you have to view it through the company's viewer.
Also, who owns your genetic code in a larger sense?
I remember a funny science fiction story, which maybe isn't so funny anymore.
A football team attempted to patent the genetic code for one of it's star running backs, so they could clone him and assure the success of the franchise forever. When he complained, he was told he should have read the fine print of the contract better...
The football team's legal team were trumped, when his parents stepped up and proclaimed thier rights as the original creators of this particular bit of intellectual property...
(i feel inspired to sign up, this is my first post to slashdot, posting is fun!)
That's a possibility. It's only a matter of time before sperm banks make the most of their .... supply.
Lol, it is so funny to read the comments from this story. I found amusing how there are already various comments wondering how would that affect negatively to their health insurance... whereas this would be *great* for say, someone under the NHS as it would allow the doctors to focus on monitoring those specific genetic conditions.
It just show how screwed up the paradigm of insured medicine is... It is a good thing that this sort of genetic monitoring is becoming available for everybody. However, I find it unfortunate to see that it can be used against those people by the same corporations who are supposed to look for your health... go capitalism!
Ubuntu is an African word meaning 'I can't configure Debian'
The movie Gattaca comes to mind.
"A new study shows that 20 percent of human genes have been patented in the United States, primarily by private firms and universities."
as of 2005
Ohne Worte (spechless, though not quite)
CC.
TaijiQuan (Huang, 5 loosenings)
What they're offering isn't "full sequencing." It's looking at a very specific set of markers (SNPs) which are known to vary widely between individuals. SNP stands for single nucleotide polymorphism -- that means one base pair or bp. There are about three billion bps in the human genome, of which these companies identify about a million, or one out of every three thousand. Such markers are certainly sufficient for genealogy, and are often enough to locate the regions of the genome on which genes predictive for certain diseases may be found, but they're nowhere near the full sequence. By way of analogy (I'm sure someone will come along to punch holes in this, but I think it's a pretty good one) a million-SNP map of your genome is like the satellite view of your house you get from Google; a full sequence is like knowing the location of every blade of grass on your lawn.
The correlation between ignorance of statistics and using "correlation is not causation" as an argument is close to 1.
People with lower risk pay lower premiums, people with higher risk pay higher premiums.
This is what the insurance business is all about.
Insurance companies now have to charge high premiums because they're having a hard time assessing the individual risk levels. When more tools are available to help measure this risk, they'll be able to charge the right premiums, which will be on average lower than what they are now. In other words they will exhaustively test every customer, seize upon every little bitty DNA defect they can find, assess it as a potential risk and jack up the premiums? Perhaps I am being paranoid here but I put the insurance industry right beside lawyers and estate agents on my list of blood sucking parasites that I mistrust on principle. Which puts them just a couple of pegs above 419ers, Enron executives, the Bush administration stooges who cooked up the Iraqi WMD evidence and generally all other other low life scam artists.
Very true, which IMO is an object lesson in why we shouldn't allow gene patents. But that's beside the point. The type of SNP mapping these companies are offering is all based on work that's well in the public domain.
The correlation between ignorance of statistics and using "correlation is not causation" as an argument is close to 1.
I think what's going on is an overzeaous application of carelessly written privacy laws. It's not that NJ (or any of the other states on the list) doesn't want you to see the map; it's that the states have laws preventing companies from doing certain kinds of data mining involving other people's genetic data necessary to give you meaningful results. (SNP maps in isolation are pretty useless.) Most likely the laws were written when having this kind of test done for an affordable price was impossible. There are good reasons for safeguarding medical data of all kinds, most certainly including genetic data, but the laws should keep pace with the technology.
The correlation between ignorance of statistics and using "correlation is not causation" as an argument is close to 1.
How do we expect insurance companies to handle this? What about the "two publics"?
On one hand, doomsayers here are saying insurance companies can choose to not insure someone with certain genes or charge them insane amounts.
Scary, but the solution is obvious -
[1] force insurance companies to ensure ANYONE
[2] legally define and enforce a ceiling rate they can charge, regardless of how bad your genes look.
I can already hear privacy advocates screaming and yelling "why give them our genes in the first place"? That's a moot point for two reasons -
1. It's a losing battle. Eventually, our genes (or those of our relatives) will be accessible.
2. Hiding our genes in general os shooting ourselves in the foot. Some (and I belong to this group, hence will use "we") may WANT their genes to be publicly available, much like I want source to be available. So products, offerings, solutions to problems and industry can spring due to their availability.
The most obvious reason not to hide our genes, however, is simple: people who have non-fucked genes will want to, they will pay a lower premium. Money talks.
Here is how it will most likely evolve from what we have today:
We pay today default premium X. I will assume charging >X is not financially feasible due to competition, and that X is the sweet spot.
Insurance companies will offer a genetic evaluation kit. It allows one to PRIVATELY evaluate himself, and submit the results to the insurance companies if his genes are ok, thereby halving his premium to 0.5X.
After a period of adoption, let's say several years, The percentage of "fucked genes" individuals in the default pool will be much higher, as many of the "ok genes" individuals have opted to pay less by letting their genes be known to the insurance company. The insurance expenses associated with maintaining the default pool will go up, causing X to go up to 2X, causing more and more people to abandon that pool.
At some point government regulation kicks in, and sets a government-controlled ceiling rate for the default rate (much like they control minimum wage).
Since the default rate is now at 2X, the insurance companies set the "ok genes" rate back from 0.5X to X, as it allows them to both maintain their incentive for people to abandon the default-paying group and share their genes, as well as allowing them to charge as much as the market allows - X.
It may be 0.9X (as the minority that costs the most is covering its expenses through a higher rate and possible government subsidation, hence making the competition-induced sweet-spot lower than when this included many expensive cases to treat).
I predict this will happen, as this is where the incentives are today. Note that the primary driving force here is consumer "greed", not insurance companies. People will want to pay that lower premium, even if crappy prophets such as myself predict that once the "fucked genes" people were isolated in the default group, everyone's rates will go back to what they were before (except the defaulters that will pay more). People will FLOCK once lower rates are offered, because people are damn well motivated by paying less.
Insurance companies WILL know our genes and it's a losing battle.
Think it through. Share your opinion.
It's something that requires thought and debate NOW.
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If you are interested in just your ancestry part check out National Geographic's Genographic project:
:)
https://www3.nationalgeographic.com/genographic/index.html
Less money and pretty interesting. I did it myself and was pleased with the results. Very interesting indeed!
And yet in most US states there is a irrebuttable presumption that a husband is the father of his wife's child if the child was born during the marriage.
So, even if you can prove (DNA testing) that she had an affair and "your child" isn't your child, the courts, in the divorce, will still treat the child as yours and force you to pay support etc. This. of course, is all done in the interest of the child.
Also, paternity fraud (lying about the father of the child) is not considered domestic abuse. It is A-OK as far as the courts are concerned.
Welcome to equality
Someone please mod the parent higher. It's good to see someone who seems to know what's going on.
The grandparent message is correct that the $1000 genome will not tell you about BRCA 1/2 or other "patented" genes. In fact, I'd have a hard time believing this tells users much about many diseases. The truth of the matter is that most genetic disease are caused by several mutations which may elevate risk. Mendelian traits -- those caused by a single mutation -- are quite rare and you're likely to know if you have one. Conditions like lupus, diabetes, heart disease, and numerous others are caused by a combination of LOTS of genes and unknown environmental factors. To give you an idea of the relative importance of the two, the identical twin of someone with lupus has something like a 25% risk of developing the disease (don't impale me if I got the number wrong, 25% is in the neighborhood). To confound matters, mutations outside of genes in parts of the genome formerly referred to as junk DNA play an ill-defined, yet important role in many (or perhaps most) complex genetic diseases. Discovering you have a rare mutation in some seemingly random spot isn't all that helpful, even if it's going to cause you to drop dead some day.
Mapping disease risk mutations is a very rich area of research. Here's a taste: some people suspect that mutations operating in pairs or general n-tuples may cause disease in specific combinations. The drag here is that when these mutations are tested individually, they may show little or no statistical association. To test even all pairs is intractable (NP complete for you CS types) and doing so introduces a statistical nightmare with lots of semi-independent tests inflating the false positive rate.
I'd suggest you save your money for a few years unless you just really want to know about ancestry, which is relatively easy to determine from many fewer SNPs than these companies are offering. I don't recall the details, but I suspect something like this plus freely available software should do the trick. You just need to find a lab with a hyb oven and a microarray scanner and a statistician to do the analysis.
The three main personalized genomics companies that have hinted at their offerings (23andMe, deCODEme, and Navigenics) are all basically offering the same product, SNP genotyping:
...however, deCODEme is founded by perhaps the largest private genetics-centered biopharma firm. It will be interesting to see how this plays out as the IT-strong 23andMe competes with the science-strong deCODEme.
23andMe: 550k SNPs + 30k custom SNPs, $999
deCODEme: >1M SNPs, $985
Navigenics: $2500, with hints at a "lock-in" model where you purchase a subscription service for continued updates as science understands more about disease:genotype correlation.
One company that was not mentioned is Knome. They haven't released details of their service, but instead of SNPs, they plan to offer whole genome sequencing. This is the direction that all of the above companies will head, once it's economically feasible to sequence the whole genome.
(Most of this has been summarized on my site: http://seqanswers.com)
I do too think it's cool, and the search for genes that might pose a health risk sounds like something great for public health. I don't know what it would implicate, but I suppose it might tell you how likely you are to have a certain type of cancer/cardiovascular disease/alzheimer and allow you to stay on the look-out for what you're the most likely to have.
Actually I hope one day (within the next 20 years) gene sequencing for health purposes will be made systematically for health purposes and stored in a super-high security database that other branches of the government/law enforcement couldn't get to, except of course via a special warrant emitted by a judge. If you think about it, it's not that unfeasible, even now. If there are about 4 million new-borns every year in the USA, and that performing sequencing really costs $1000 (but we can safely assume it actually costs less), then it would cost $4 billion a year, which makes it almost affordable (although probably not worth it, and surely not going to happen anytime soon).
You just got troll'd!