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Direct-To-Consumer Genetics Testing Makes a Splash In Boston
eldavojohn writes "MIT's Technology Review has the scoop on the first annual Consumer Genetics Show starting today in Boston and it looks like the rage these days is genetic testing sans the middle-man physician. And it's getting more prevalent and more available: 'A number of companies offering direct-to-consumer genetic testing have cropped up in the past two years to capitalize on these advances, from 23andMe and Navigenics, which offer genome-wide scans to identify specific disease-linked genetic variations, to Knome, which offers whole-genome sequencing to the wealthy. Any doubts that personal genomics is making its way into the mainstream can be assuaged with a look at Interleukin genetics, a startup that sells genetic tests for heart-disease risk, B vitamin metabolism, and other factors through Amway, the direct-sales company.' Over-the-counter genetic tests may be much closer than you think. The article raises concerns that this information will be misused/misinterpreted or even provide a false sense of security. We've discussed some states prohibiting this last year."
It about damn time KDE get it network object model environement...
Considering the statistical prevalence of botched tests in the controlled laboratory environment of mainstream medicine, I shudder to think how many "wrong" results we will see when a pyramid company like Amway starts offering tests direct-to-consumer.
If libertarians are so opposed to effective government, why don't they all move to Somalia?
Have your own DNA sequence would be cool and everything, but it's not everything. Epigenetic changes have a massive impact on gene expression, they're not included in the sequence and they're heritable. Of course, there are lots of things you can look at in the sequence, but you could miss a lot by getting too hung up on just the sequence.
One of the more popular brands, called "plasmids," are bound to become mainstream, and, well, we have Bioshock to explain what happens after that.
Get everybody burning those Ayn Rand books, on the double!
Wonder how long it will take before people start finding ways to criminally abuse these kits, by say testing someone else without their knowledge or consent then blackmailing them to not reveal their predisposition to illness to their health insurer, or in the case of a celebrity the media?
Slavery is the legal fiction that a person is property; A Corporation is the legal fiction that property is a person.
People do not possibly comprehend the accuracy required for genetics tests to have any validity, of which even current companies aren't the best at. By using a company like Amway, all that you're going to get is very rough probabilities, exactly the opposite of what consumers want, but what they'll be left with, since they naturally cut corners and need to do a CYA job, leaving that as the net result.
The only hope I can come of with this nonsense is that people begin realizing the NEED for accuracy on scales beyond you can imagine as a result of the useless of genetics tests when you don't do them right.
Note: I've already done these tests (NOT Amway, of course), which is why I know what I'm talking about here.
an advertisement for Amway.
although I can't complain too hard, even with stuff like this and kdawson... The good stuff versus crap ratio is still (significantly) higher on this site than most others which is why I keep coming back. uh, yay slashdot?
anyways, I understand the Ashkenazi Jews have been doing this for some time due to specific genetic disorders specific to their group. And, as I'm no expert I'm not going to talk at any length on this, go wikipedia it =)
Whoa, there! Don't blame that political circus on the Govt as a whole - that was entirely GOP's political overreaching. Special intervention by the Governor of Florida, Bill Frist diagnosing a patient by video from the floor of the Senate, and then all the silly pandering and theatrics - that was all a play to the base.
Don't blame the entire government for the actions of some cynical jackoffs.
And yet, the government is exactly who you're going to run to when one of those tests finds something bad and the insurance companies won't touch you.
...Mari Baker was on the Stanford Entrepreneurial Thought Leaders podcast a few months ago; she gave an pretty interesting talk.
Actually, if you've got a long commute or like to jog and listen to stuff, the whole ETL archives are pretty good. Some of the ones featuring starry eyed (and heavily government subsidized) green-tech folks are kind of tedious, but, most are good stuff.
The Army reading list
they even had genetic testing. they would terminate the pregnancy any time
the baby showed signs of a non-sloping forehead, pronounced eye ridge, and
non-lumbering gaits.
C'mon anonymous coward, everybody knows that Randian supermen never get sick...
I watched this (not entirely good) movie with despair. That's not the way I want my world to become. I want no part of it. Some things just shouldn't be messed with.
If it ain't broke, DON'T fix it.
At least this will help us in the long run, start to get new techniques, medications, even procedures out quicker because there are always a few brave souls willing to risk it all, for that end result.
I actually had a startup doing direct to consumer (DTC) genetic testing for a mutation that gave resistance/immunity to HIV. For many reasons, we aren't around anymore, but the reasons included regulatory changes, a rapidly changing market, and ethics. I now feel it's morally wrong to offer these tests to consumers who have no idea how to interpret them and what they mean; at least genetic counseling should be offered with the test. Someone should not make life altering decisions without the consultation of someone trained in the area. For example, suppose someone gets a BRCA 1/2 test, which tests for predisposition to breast cancer. Suppose 60% of those with the BRCA mutation get breast cancer (don't quote me on that figure, but it's in that range). Many women may then decide to get a mastectomy, however, the actual likelihood is much lower than 60% (see Bayes Theorem). Without consultation, they may make a terrible choice, and unfortunately many doctors are not trained in genetics yet. I've since become involved with a doctor in the Connecticut/New York area who has started a practice centered on genetics. I'm now convinced that this is the only way to go, and that direct to consumer tests are simply a passing phase. 23andme and Navigenics even say that their tests are not medically useful. I have a blog devoted to this topic if anyone is interested: http://www.thinkgene.com/ and the doctor at that practice also has a blog: http://thegenesherpa.blogspot.com/ In fact, if anyone wants a free genetic test that's better than the one offered by 23andme and Navigenics, and you happen to be in the New Jersey area, Coriell is giving them away (http://www.thinkgene.com/i-spit-at-coriell), and this is where the future of genetics is going.
without IBM testing for the genetic trait of psychopathy, IBM as a future business is doomed, since all of its competitors will do better in business. this is due to the fact that they will be screening for psychopathy and will only be hiring executives who show a strong affinity for the set genetic markers for psychopathy
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
Come on... Is the freedom of information crowd really going to rally against letting people get this information on themselves because they assume that they won't understand it or use it correctly?
Also, I'm not exactly the most pro-business guy in the world but let's see if they screw up before we start talking about outlawing their industry. If there's a company out there that claims to be able to do it accurately, let them operate until there's proof otherwise. Even if they were selling inaccurate tests, though it would be completely immoral, it wouldn't exactly be a direct danger to people.
by a strange coincident, this was published today.
http://www.explosm.net/comics/1681/
Name...That...Autocomplete!
are you fucking calling programmers asocial psychopaths?
are you fucking sure you want to call programmers asocial psychopaths?
I SAID ARE YOU FUCKING SURE THIS IS THE WAY YOU WANT TO PLAY THIS?
are you fucking listening to me?
ARE YOU FUCKING LISTENING TO ME?
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
Seemed safer than calling my manager a psychopath :-)
BTW: my IP address is 127.0.0.1 - see if you can harm me!
What? A company based on pyramid selling wouldn't be a good place to buy my genetic tests from? No...
As someone with a PhD in genetics, I can tell you that most people in the US don't have the minimum level of biology to even understand what the results of a test could mean. Biology is a foreign language to those not trained in it. Trying to give a layperson the "bottom line" from such a test is potentially a bad idea. That doesn't mean I am opposed to the idea; I think it's great. But as others have pointed out, without any sort of genetic counseling, or attempt to understand the language on the consumer's part, it can be misinterpreted: all of this will only reveal predispositions, not guarantees.
Early in my grad school career I had many college and high school friends, as well as relatives, ask me about my research. I tried explaining it as simple and non-technical a manner as possible. But I quickly realized that many of them did not know very basic tenets governing genetics, such as:
1. Everybody has two copies of every gene. (Sex chromosomes excluded for simplicity's sake.)
2. One copy of each gene comes from your mother, and one copy comes from your father.
3. There are different versions of each gene; these versions are called alleles.
4. Alleles can have slightly different affects in the body, sometimes resulting in disease (*extreme hand waving*).
(Anyone with even half a semester in genetics realizes how many things I have glossed over (the definition of a gene, gene expression and regulation) or skipped (transcription, translation, epigenetics), never mind the fact that I didn't put forth the disclaimer that, beyond single gene diseases, we don't even understand how 99.9% of alleles interact.)
So I had just taught them how genes work in 2 minutes. There would be so many questions revolving around these 4 points, and each question lead on tangents unrelated to my research. Most of the time the actual subject of my research never came up.
Furthermore, this also assumes such a test is accurate. How many experimental replicates and technical replicates are run?
The government did a study a few years aback, regarding the legitimacy of online genetic testing companies. The whole report can be found here: http://www.gao.gov/new.items/d06977t.pdf Their findings are a bit disturbing to say the least, it seems like some of the genetic testing companies out there try to sell you their "nutritional supplements" and none of the companies that were tested seemed to provide solid, accurate results. There also seems to be a lack of oversight regarding the procedures.
[insert generic slashdot meme]
The highly targeted genocidal possibilities of moving this forward are terrifying.
Over the counter genetic testing is already here. In a local drug store I've seen at home paternity tests, right next to the at-home drug tests. Its amazing that no matter how you distrust your family, there is now an at home test to cover it...
I'm waiting for the first do it yourself clone kit
not everyone uses them wisely
is this a valid rationale in your mind for denying them their reproductive rights? of course not
likewise, simply because a lot of people are idiots about what their genetic makeup means, this is no rationale for denying them that information. its already there's, it's already their provenance. they every right to know what it is, regardless of what they do with it
the logical fallacy in your thinking is that denying them access to the information will prevent them from doing something ignorant. no, if you deny them the information, they will do something ignorant anyways. because they are ignorant. they will do something ignorant regardless. therefore, giving people free access to their own genetic information is not the deciding factor in the harm someone might or might not do with information that is their rightful inheritance, literally
people must educate themselves as to what their genetic information means. if they are not willing to do this, they are not willing act responsibly in their lives regardless of what you tell them or do not tell them, and they are already bound to screw themselves up some ways no matter what you tell them or withhold from them. why do you think other people's ignorance is your responsibility?
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
Does this mean that in Tennessee I will finally be able to find out if I really am my own first cousin?
I have been thinking about using these genetic tests for "Diversity" compliance at work.
We have been told that we don't have enough "minorities" in our group. This despite the large number of foreign workers in our group. I guess they aren't the right kind of "minority". This affects our end-of-year bonus and hiring decisions.
So, I am thinking about buying everyone in the group a free genetic test. Totally voluntary!
And then using a reverse version of the "one-drop" rule to increase our "diversity" score.
Here's a nifty story I did for Politics in Minnesota based on the docs about Minnesota's mostly-mandatory infant DNA screening program. It turns out that the State owns the DNA intellectual property rights but the Mayo owns the derivative works, according to the contract. Who knew?
The original headline was "Freedom of consent, total galactose & intellectual property: Minnesota's infant DNA Mayo-Gopher industrial complex". see
http://www.politicsinminnesota.com/2009/may29/3251/freedom-consent-total-galactose-intellectual-property-minnesotas-infant-dna-mayo-gop
Get 100 MB super-multifile-PDF here - OCR'd
http://www.politicsinminnesota.com/files/infant-dna-combined-doc.pdf
ledes:
A new round of documents obtained from the Minnesota Department of Health (MDH) regarding the state's Newborn Screening Program (NBS) show interesting implications about the difference between its role catching certain dangerous genetic diseases, and the various genetic research and testing programs that the samples ultimately get sent to. There's quite a difference between the "trip-wire" disease screening program and the DNA studies; the role of DNA research as intellectual property suddenly pops up.
The study project authorizations approved by the Department of Health involve DNA research; critics of the policies around the newborn DNA samples want to know what happens to all the genetic data, and who might profit from it. Two big players around here, the Mayo Clinic and the University of Minnesota, do work on the blood samples. The operative contracts, which include defining the "intellectual property" of what could almost be called the "derivative works" of newborn DNA, of the U of M and Mayo were obtained by lawyer Nathan Hansen, working in concert with the Citizens Council on Health Care, via Data Practices requests.
Here is the University's newborn screening contract and the Mayo's [PDFs]. Fans of cellular rights might find the parts on the State apparently owning their chromosomes a bit profound! [PIM combined all of Hansen's PDFs, now searchable via OCR...]
--hongpong.com
Have you had it with these mother-fucking snakes on this mother-fucking plane? I know I have.
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