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Direct-To-Consumer Genetics Testing Makes a Splash In Boston

timothy posted more than 5 years ago | from the what's-under-my-shell? dept.

Biotech 78

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."

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Knome (2, Funny)

Anonymous Coward | more than 5 years ago | (#28267511)

It about damn time KDE get it network object model environement...

Re:Knome (2, Funny)

SEWilco (27983) | more than 5 years ago | (#28268903)

Yeah, but I use Gnome. Its genetic sequencing has an awful user interface.

Disaster waiting to happen (5, Insightful)

oldspewey (1303305) | more than 5 years ago | (#28267547)

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.

Re:Disaster waiting to happen (1)

Austerity Empowers (669817) | more than 5 years ago | (#28267787)

Dammit it said I'm pregnant!

Re:Disaster waiting to happen (0, Troll)

jeffmeden (135043) | more than 5 years ago | (#28267951)

Direct to consumer is a bit of a misnomer, with Amway it will be more like direct to reseller to reseller to reseller to reseller to drug dealer's wife to drug dealer's wife's kid (from another daddy) to another reseller to YOU. With efficiency like that, the price will be GREAT!

Re:Disaster waiting to happen (4, Informative)

pzs (857406) | more than 5 years ago | (#28267979)

Don't even get me started on the complexity of the bioinformatics that will be involved in resolving this data. All you'll need is for somebody to misplace a switch in the pipeline of tools you need to analyse data from these insanely complex high-throughput sequencing [wikipedia.org] devices and you could get completely unreliable results.

Of course, that won't happen because IT professionals never make mistakes.

The difference between a pathological and a normal allele could be just one SNP [wikipedia.org] - any number of cockups in experiment or analysis could misidentify this kind of difference.

I know, this kind of misdiagnosis can happen anywhere, but these companies are selling some kind of miracle new method when we're only just getting started on understanding how high-throughput sequencing works. Bad idea.

Re:Disaster waiting to happen (1, Funny)

Anonymous Coward | more than 5 years ago | (#28268185)

You are suffering from short-term thinking. Sure you've been misdiagnosed with having a pathological allele ... but think of the satisfaction and financial freedom that comes with working from home doing something you love all while earning up to fifteen thousand dollars per week.

Re:Disaster waiting to happen (1)

Lord Ender (156273) | more than 5 years ago | (#28269851)

Yes software development is error-prone. But your assumption that they no QA process is highly questionable.

A bug which causes "completely unreliable results" would actually be quite easy to find, when it tells a white man he's disposed to sickle-cell, for example. I would imagine the process also has some "sanity checks" to see if the gender and eye color detected genetically matches the customer.

So, yes, there will be bugs. So what? Hopefully they will be caught in QA. If not, they will likely be caught afterward. It's not like "there might be bugs" is a good reason to stop using software. You're on a computer with buggy software right now, by Odin!

Re:Disaster waiting to happen (2, Insightful)

Belial6 (794905) | more than 5 years ago | (#28270687)

Seriously, just look at how complex a CPU is now, and think about the fact that everything from airplanes to street lights to your personal finances are controlled by the devices that are insanely complex with insanely complex production processes. Yet people trust these just fine.

Then there is the "But this is your health" idea. People are making huge choices every day with information that is already known to be loaded with errors. Why worry about this being any different. Hell, people are buying "health water" because it has few calories than the other brand of "health water". I would be WAY more concerned with people causing problems to their health due to misinformation about what "water" is than the same person being told that they have a low risk for breast cancer.

Re:Disaster waiting to happen (1)

Hurricane78 (562437) | more than 5 years ago | (#28284967)

Yes they can do QA. But your assumption that they would be motivated to do so is highly questionable.

They could only lose clients, and thereby profits, by doing it. And the first priority of a business is always money. Even if it mean death, rape and torture of millions of people. See Monsanto or Haliburton for examples.

Re:Disaster waiting to happen (1)

Lord Ender (156273) | more than 5 years ago | (#28287937)

LOL, who did Monsanto rape? What sort of money do they pay rapists? I thought they did biotech.

Re:Disaster waiting to happen (1)

rockmuelle (575982) | more than 5 years ago | (#28270191)

"Of course, that won't happen because IT professionals never make mistakes."

It's not just IT professionals. It's bioinformatics in general. Most of the code at the heart of these pipelines was developed by grad students to generate publications. The code is not production quality. The code is always poorly commented. Scientific validation is very ad-hoc - there are no generally accepted methods for validating algorithms that operate on genomic data. There's a culture in bioinformatics (and to some extent, scientific computing in general) of ignoring software quality when the code generates the results that were "expected".

Unfortunately, once something is published, biologists tend to trust it. This generally works for wet-lab protocols, where the reviewers are familiar with the experimental design and analysis. But, bioinformatics papers are often reviewed by the same people, who are completely unqualified to review software papers (most computer scientists are, too, but that's another post for another day).

But, don't believe me, see for yourself. These programs are forming the foundation for the next generation of personalized genomics applications:

http://www.oxfordjournals.org/our_journals/bioinformatics/nextgenerationsequencing.html [oxfordjournals.org]

Download the software developed for any those papers. Browse the code. Be afraid.

-Chris

Re:Disaster waiting to happen (0)

Anonymous Coward | more than 5 years ago | (#28271427)

The consumer genomics/genetics companies are several years behind the curve of academic, biotech, and pharmaceutical research, so by the time tests are available for you to purchase over the internet, they are usually highly optimized, and the informatics pathway has already been well established. Current outfits like 23andMe are using STRs (the same technique used for forensic applications). STR testing has been around for a long time, is well understood, and generates only small amounts of data per-person. By the time the newer high-throughput sequencing methods are available direct to consumers, the data pipeline and storage problems will have already been solved by the universities, biotechs, and pharmaceutical companies that are currently using those techniques.

Re:Disaster waiting to happen (1)

RDW (41497) | more than 5 years ago | (#28272031)

I don't think the biggest issue is any potential bug in the software. Rather, it's the interpretation of the data even when it's been analysed correctly. At this stage, most of large-scale genomic profiling being offered to consumers is based on SNP chips rather than next-generation sequencing. These typically give a readout of 'only' several hundred thousand variable bases scattered across the genome. The difficulty lies in attributing meaning to any particular variant. Simply matching against a database derived from previous 'genome-wide association studies' into various diseases is very likely to give misleading results (very often the variants themselves aren't functionally significant, and just act as pointers to something that might be - this is well understood by the scientists doing the experiments, but probably not by consumers!). Full genome sequencing will have its own problems, of course, though again I think the interpretation (and factors like coverage depth) will be more of an issue than the basic data crunching pipeline (which will probably be industry standard software run at a major facility).

As it happens, I was at a scientific meeting earlier today, where one geneticist put up a slide showing an image from a personal genomics company advert of happy smiling people who had presumably received favourable data. His comment was that the only person who should really be smiling about this would be the CEO of the company, for making rather a lot of money from offering tests of questionable value...

Re:Disaster waiting to happen (0)

Anonymous Coward | more than 5 years ago | (#28271815)

This is why getting informed and specialized advice and information is important, one company that provides this is AccessDNA.com [accessdna.com]

Thinking of using these for "Diversity" compliance (0)

Anonymous Coward | more than 5 years ago | (#28272731)

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.

My body, my choice (-1, Flamebait)

Anonymous Coward | more than 5 years ago | (#28267559)

The same govt that plays politics with Schiavo's tubes and seems poised to make a whole lot more decisions about my healthcare and lifestyle, seems unwilling to simply let me get a test.

Don't like it one bit. And I don't expect congress will do a better job that me at deciding what info I might want to know about my own body.

Re:My body, my choice (3, Informative)

Reality Master 201 (578873) | more than 5 years ago | (#28267731)

The same govt that plays politics with Schiavo's tubes

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.

Re:My body, my choice (0)

Anonymous Coward | more than 5 years ago | (#28267733)

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.

Re:My body, my choice (1)

fuzzyfuzzyfungus (1223518) | more than 5 years ago | (#28268089)

C'mon anonymous coward, everybody knows that Randian supermen never get sick...

What about epigenetics? (4, Informative)

pzs (857406) | more than 5 years ago | (#28267599)

Have your own DNA sequence would be cool and everything, but it's not everything [wikipedia.org] . 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.

Re:What about epigenetics? (3, Insightful)

ruin20 (1242396) | more than 5 years ago | (#28267907)

We're not looking for a complete work up here. Genetic testing becoming more available and consumable is a good thing as it should spur development in the industry. Additionally there are a lot of conditions for which people can have genetic predisposition and knowing that predisposition may change their treatment and behavior in ways that may actually save money. Being able to better focus and tailor one's individual medical care is a good thing and will hopefully lead to long term cost savings. I hope genetic testing for serious, long term disabilities that can drive up end of life care becomes common place as it could be used as a mitigation for rising cost of treatment.

Re:What about epigenetics? (5, Interesting)

interkin3tic (1469267) | more than 5 years ago | (#28268039)

Which is just one of the hundreds of ways unscrupulous companies could overstate the results they are selling.

I do think it's likely though that most companies will be following established markers, saying for example "You have form B of gene X which may predispose you to breast cancer, you should be more vigilant about getting mammograms. This does not mean you WILL get breast cancer." It would be quite an obvious ethical violation if a company like this were to say "You have gene Y, that means Y disease or good thing will happen."

In fact, I don't think these companies should deliver any news but INCREASED risk of certain diseases. No matter how many disclaimers you put on any "good" news, about how it's just one factor, you know people will just hear what they want to hear.

For example, if you tested for a gene that maybe lowered your risk of heart disease slightly, people would:

1. See that they have one marker for low risk of heart disease
2. Ignore/misunderstand the disclaimers that this is just one marker and there are numerous factors
3. Use it as an excuse to smoke and eat steak and eggs every day, saying "It's okay, I have good genes!"
4. Die of massive heart attack
5. Families sue these companies saying they lied, which will be a waste
6. PROFIT (for the lawyers)

But there are known risk factors in DNA sequences that have been established even when epigenetics have been ignored. Risk factors that you can do something about, like predisposition to certain types of cancers, are something people should be aware of.

Not so sure about predispositions to uncurable diseases like huntington's. I'm sure some of these companies will offer options to people who don't want to know about things they'll have no control over.

Re:What about epigenetics? (2, Interesting)

blueskies (525815) | more than 5 years ago | (#28269315)

Isn't that a good thing? The stupid people die off to make room for the rest of us?

Re:What about epigenetics? (1)

interkin3tic (1469267) | more than 5 years ago | (#28269485)

You'd think, but since the lawyers profit there, it's just trading one class of idiot for another.

Re:What about epigenetics? (1)

timeOday (582209) | more than 5 years ago | (#28270075)

Or maybe it isn't stupid. Genetics play a strong role in who gets addicted [nih.gov] , and a huge role [sciencedaily.com] in the carcinogenic effects of smoking as well. I know there is a certain public-health mentality that abhors these studies fearing they might give some people license for risky behavior, but if you ask me that's just ignoring the facts to fit the risk model as it was previously understood. The fact is, people do have different risk/reward ratios depending on individual differences. My fair skin means I have to mess with sunscreen more than black people. But I don't have to regulate my intake of sugar like my diabetic friend does.

Re:What about epigenetics? (1)

blueskies (525815) | more than 5 years ago | (#28295185)

I'm not sure why you are responding to my post. I don't disagree that there genetic factors play a huge role in disease (ie: heart disease).

I am saying just because stupid people would "overplay" their cards is no reason not to offer the testing.

As long as the companies are truthful in their information they have no duty to prevent people from being stupid with it.

Re:What about epigenetics? (2, Interesting)

Red Flayer (890720) | more than 5 years ago | (#28269657)

It's not just about risk of disease in the person tested. It's also about reproduction.

Genetic counseling is important for proto-parents who have inheritable diseases, or may carry an unexpressed gene for those diseases.

Furthermore, lots of insurance companies don't cover genetic counseling. It can get very expensive...

Example. I have slight hip displasia (genetic). My wife does not, but her brother does -- and her brother's son had a much more serious condition that was at least partially due to the same gene. My daughter was born with hip displasia and another related birth defect, which required multiple surgeries, although it was a minor defect.

If my wife and I want to have another kid, genetic testing will help us assess the risk of serious congenital disease. This risk assessment will help us determine if we are fiscally prepared for another child, since we'll need to factor in the potential cost of one of us not working, or paying for special care, if that child were to be at high risk for serious birth defects.

So, the question is, do I need to pay a genetic counselor $600, when I could get the tests done myself for $100? I have access to the studies that give the prevalence and severity of birth defects according to the genes of the parents. I just need to know (1) Do I have one copy of the gene or two and (2) Does my wife have 0, 1, or 2 copies of the gene.

So why shouldn't I be able to have these tests done myself, instead of having to pay the overhead of going through a genetic counselor?

Re:What about epigenetics? (1)

daymitch (699517) | more than 5 years ago | (#28274701)

Certain next-generation sequencing technologies can generate this information, too. It lags a bit behind the canonical base sequencing, but not much.

Re:What about epigenetics? (0)

Anonymous Coward | more than 5 years ago | (#28283763)

Reporting from the Conference (now in its 2/3 days) there is much talk about genomics inseparable from epigenomics. Essentially, the two are of the sides of the same coin. HoloGenomics is offered as a uniting concept.

Francis Collins just showed up to deliver his Keynote lecture.

pellionisz_at_junkdna.com

All downhill from here (3, Funny)

gbarules2999 (1440265) | more than 5 years ago | (#28267635)

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!

Re:All downhill from here (1)

Drakkenmensch (1255800) | more than 5 years ago | (#28268293)

Forget everything you know about misuse of genetics and consumer plasmids... would you kindly?

Genetic Blackmail (5, Interesting)

LSDelirious (1569065) | more than 5 years ago | (#28267683)

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?

Re:Genetic Blackmail (4, Insightful)

Devout_IPUite (1284636) | more than 5 years ago | (#28267969)

There was a law passed saying you can't discriminate on genetics. That law and the private health care industry are mutually incompatible, one will have to die within the next 5-15 years.

Re:Genetic Blackmail (2, Informative)

dk90406 (797452) | more than 5 years ago | (#28268207)

There was a law passed saying you can't discriminate on genetics.

There, that will stop the criminal blackmailer in their tracks. :-P
On a more serious note, IBM (and hopefully other companies), has made a corporate rule to never require genetic information from employees or from people applying for a job. They are out early, but that is only good, as future tests may reveal tendencies for violence, psychopathy or ...

psychopathy? (1)

circletimessquare (444983) | more than 5 years ago | (#28268707)

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

Re:psychopathy? (2, Informative)

dk90406 (797452) | more than 5 years ago | (#28269063)

True, that is a risk. But all companies get their share of psychopaths today. They use people to screen them, and generally stop them before they are put in positions, than can damage the company.
There are many jobs they are not ideally suited for, but they may be damn good as programmers or other non-people facing jobs.

are you calling programmers asocial psychopaths? (2, Funny)

circletimessquare (444983) | more than 5 years ago | (#28269207)

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?

Re:are you calling programmers asocial psychopaths (1)

dk90406 (797452) | more than 5 years ago | (#28269339)

Seemed safer than calling my manager a psychopath :-)
BTW: my IP address is 127.0.0.1 - see if you can harm me!

Re:are you calling programmers asocial psychopaths (1)

Eli Gottlieb (917758) | more than 5 years ago | (#28275627)

Have you had it with these mother-fucking snakes on this mother-fucking plane? I know I have.

Re:Genetic Blackmail (1)

somersault (912633) | more than 5 years ago | (#28268457)

Kind of like laws saying you can't discriminate by age, race or sex either? They're obviously working really well.

Re:Genetic Blackmail (0)

Anonymous Coward | more than 5 years ago | (#28270137)

I think you've been living in the USA for too long. Health insurance isn't really ment to be something that you pay through the nose until you actually need it, at which point the insurer considers you an unacceptable risk and cancels the contract. It should be something that everyone pays for and is covered in the same way. The insurers should use thir "purchasing power" to demand lower cost, more efficient service - instead, they currently probably profit from the high cost of medical procedure, because not having an insurance is an enormous financial risk with 60% of private bankruptcies attributable to medical problems. [esciencenews.com]

Re:Genetic Blackmail (1)

Rich0 (548339) | more than 5 years ago | (#28273107)

Actually, such a law is perfectly compatible with private health care.

However, it is completely incompatible with voluntary private health insurance. It is only compatible with voluntary public health insurance if taxpayers don't mind paying through the nose as a result of it.

And the problem isn't even the law - it is the existance of the technology. Suppose I take a genetic test and find out that I'm unlikely to suffer from any chronic health problems until I'm 70, and then I'm likely to develop diabetes. (Never mind that this is oversimplified - the argument applies equally well if you just get probabilities/etc out of it.)

Now, an insurer can either discriminate against me on the basis of this information or not. If they can discriminate then I get really cheap insurance until I'm 70, and then I'm dropped. Of course, age 70 is when I actually need the insurance. Not very fair, so the public won't stand for this.

Ok, so this law prevents me from being discriminated against. Now I am free to get some catastrophic care insurance package for very little money with a $10k deductible - this covers me if I get hit by a car and need trauma surgery. Then, when I hit age 69, I take out a very expensive and comprehensive policy that will pay even the tiniest expense for diabetes. If everybody does this, the insurance industry goes bankrupt - all their customers will be sick people since the healthy will stay away. Either that, or they have to charge huge premiums so that nobody can get insurance anyway (which the public won't stand for).

The only way you can have insurance in a world with this kind of knowledge is if everybody is forced into the risk pool whether they want to be there or not. That is essentially public health insurance, although there are ways it could be semi-privatized. However, for it to work the government needs to rule with an iron hand and make sure everybody pays in.

Re:Genetic Blackmail (1)

RsG (809189) | more than 5 years ago | (#28274497)

That is essentially public health insurance, although there are ways it could be semi-privatized. However, for it to work the government needs to rule with an iron hand and make sure everybody pays in.

I don't know where you live but, regardless of the particulars of the health care system, the "iron hand" you refer to no doubt exists already (assuming you aren't in, say, Somalia),. Taxation.

Most government health insurance programs in the world are tax funded, including the "semi-privatized" ones. This is both a good and bad thing - it makes sure everyone pays in, and everyone gets covered, but it also raises the tax burden. Most people living with such systems consider this worthwhile, provided of course that the money isn't being misused. (Not that money is any less likely to be misused in the private sector, given how most insurance companies behave, but people raise more of a stink about how their own tax dollars are spent.)

Every government in existence is pretty particular when it comes to tax collection. Iron handed would be a good descriptor.

It really comes down to a choice for the citizenry. Whether they would rather have universal coverage, without the headaches that come with a private health insurer, but at the cost of higher taxes and limited health resources (two problems which are inextricably linked - less of one means more of the other). Or whether they want to have less taxation at the cost of paying for their own health.

Re:Genetic Blackmail (2, Insightful)

kungfugleek (1314949) | more than 5 years ago | (#28268061)

Or perhaps a well-known CEO of a wildly successful company keeping his shareholders in the dark about the truth of his personal health? Yes, as with any commonly available technology, the possibility for abuse is staggering.

Re:Genetic Blackmail (1)

Golddess (1361003) | more than 5 years ago | (#28269685)

Steve Jobs' health should have no bearing on the financial success of Apple.

Yes, I know in actuality it does (did?), but Steve Jobs isn't immortal, he will one day die. If Apple is to continue after Steve Jobs, he needs to be able to step aside quietly now so that Apple may shine on its own without the help of the reality distortion field.

Re:Genetic Blackmail (0)

Anonymous Coward | more than 5 years ago | (#28272255)

but Steve Jobs isn't immortal, he will one day die.

WITCH! Burn the heretic before he can cast his evil curse on our savior!!!

Re:Genetic Blackmail (2, Interesting)

Qzukk (229616) | more than 5 years ago | (#28268083)

how long it will take before people start finding ways to criminally abuse these kits

Who needs a kit for that? Just tell the person you ran the test and you're going to let everyone know what the results were, if they call your bluff move on to the next victim.

Re:Genetic Blackmail (0)

Anonymous Coward | more than 5 years ago | (#28268345)

And then you sue them for the insurance money which you would have received.

Re:Genetic Blackmail (2, Informative)

7-Vodka (195504) | more than 5 years ago | (#28268675)

That's really insightful. It brings to mind the movie GATTACA when ethan hawke had to be extremely careful of where he left his dead skin cells, saliva, hair, etc. But this will be the case regardless of whether these tests are direct to consumer.

Imagine a home kit for paternity testing. Someone could get access to some of the british royals saliva or hair and blackmail them with proof that prince harry was diana's lover's son. I know it's blatantly obvious already, the guy is a spitting image of her red headed ex lover and looks nothing like charles but you'd be amazed how many people don't believe it.

In fact, why not high-throughput this stuff? How long before companies install sample collectors on the subway and start storing and cataloging millions of people's DNA? How long before the government decides to do it en masse? I mean they're already expanding their efforts here [washingtonpost.com] here [infowars.com] and here [74.125.47.132] .

Hopefully people wake up at some point and demand legislation which states that their biological information belongs to them and cannot be used without their express consent.

Amway = Worst Possible Company for Genetics Ever (5, Insightful)

jr76 (1272780) | more than 5 years ago | (#28267689)

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.

Re:Amway = Worst Possible Company for Genetics Eve (1)

smidget2k4 (847334) | more than 5 years ago | (#28269511)

What? A company based on pyramid selling wouldn't be a good place to buy my genetic tests from? No...

oh cool (1)

JeanBaptiste (537955) | more than 5 years ago | (#28267699)

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 =)

Re:oh cool (1)

VinB (936538) | more than 5 years ago | (#28267983)

Or I could Bang [bing.com] it.

Re:oh cool (1)

somersault (912633) | more than 5 years ago | (#28268537)

And end up with a Wikipedia link as your top result.. way to add in an extra useless click and shill for MS..

PS I just banged your mom [bing.com] :p

Re:oh cool (1)

VinB (936538) | more than 5 years ago | (#28347761)

Well done.

The former CEO of Navigenics... (1)

tcopeland (32225) | more than 5 years ago | (#28267797)

...Mari Baker was on the Stanford Entrepreneurial Thought Leaders [stanford.edu] 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 [stanford.edu] 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.

neanderthals, actually, were far more advanced (0, Offtopic)

goffster (1104287) | more than 5 years ago | (#28267847)

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.

One Word: GATTACA (1)

sxedog (824351) | more than 5 years ago | (#28268129)

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.

This will help! (1)

hesaigo999ca (786966) | more than 5 years ago | (#28268215)

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 had a DTC Genetic testing startup (4, Interesting)

Ingenium13 (162116) | more than 5 years ago | (#28268275)

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/ [thinkgene.com] and the doctor at that practice also has a blog: http://thegenesherpa.blogspot.com/ [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.

Re:I had a DTC Genetic testing startup (5, Interesting)

pzs (857406) | more than 5 years ago | (#28268635)

Without consultation, they may make a terrible choice, and unfortunately many doctors are not trained in genetics yet.

In this case, the problem is that Doctors are not trained in statistics. The example you quote, and many more, are reference in this excellent book [amazon.co.uk] about the irrational decisions people make, partly because they don't understand statistics.

Re:I had a DTC Genetic testing startup (1)

treeves (963993) | more than 5 years ago | (#28274011)

IIRC, in that book he makes an interesting claim about the understanding of physicians in regard to Bayesian probabilities in particular.
In fact, I made a PowerPoint slide about it to teach co-workers about it, so I still have the example available:

1% of women at age forty who have routine breast cancer screening actually have breast cancer.
80% of women with breast cancer will have a positive mammogram.
10% of women who dont have breast cancer will get a false positive mammogram.

Ask MDs "A woman age 40 has a positive mammogram. What is the probability that she really has breast cancer?"

Most of them say something like 80%, maybe 70%.

Actually, it is MUCH lower.
Imagine 1000 women get screened. 1% (= 10) of the 1000 actually have cancer. Of these ten, eight (80%) have positive mammograms. The other 990 dont have cancer but 10% of them (= 99) get positive mammograms. In total, 107 (8 + 99) have positive mammograms, but only eight are real. So, given a positive mammogram, 8/107 (=7.48% ) actually have cancer.

Re:I had a DTC Genetic testing startup (2, Insightful)

Daniel Dvorkin (106857) | more than 5 years ago | (#28269449)

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;

It is never morally wrong to give people information about their own bodies. Not ever. In nine years of patient care and twelve years of research, I have never encountered a situation in which deliberately withholding information from a patient was the right thing to do, and at this point I really don't expect I ever will. (I have, unfortunately, encountered many situations in which withholding information was the wrong thing to do, and have had to do it anyway as a matter of policy.) To be sure, it's better if the information is presented by the appropriately trained professional (who may be an MD, or may not, depending on the circumstances) who can best help the patient understand it, but in any case, patient information belongs to patients. It's theirs. They own it.

at least genetic counseling should be offered with the test.

Indeed, and it would be perfectly reasonable for a genetic testing firm to offer its tests on that basis: "We only do the test as part of a package that includes genetic counseling." But once the test is done, no one has the right to force the patients (or perhaps "clients" would be a better word in this case) to get the counseling in order to see the data.

everyone has reproductive organs (1)

circletimessquare (444983) | more than 5 years ago | (#28271479)

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?

Re:I had a DTC Genetic testing startup (0)

Anonymous Coward | more than 5 years ago | (#28271703)

Very interesting - there are also companies starting up that specialize in helping inform and teach users, giving them access to information and genetic councelors, etc, such as AccessDNA.com [accessdna.com]

Honestly though... (1)

RandomUsername99 (574692) | more than 5 years ago | (#28268861)

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.

Re:Honestly though... (1)

blueskies (525815) | more than 5 years ago | (#28269373)

I see an opportunity to become a certifier of genetic testing companies.

Consumers won't understand (1)

drunken_boxer777 (985820) | more than 5 years ago | (#28270227)

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?

Reliable Results? (1)

sammaverick (771437) | more than 5 years ago | (#28270353)

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 [gao.gov] 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.

swab from my cold dead cheek (1)

droidsURlooking4 (1543007) | more than 5 years ago | (#28270369)

The highly targeted genocidal possibilities of moving this forward are terrifying.

OTC Paternity test (0)

Anonymous Coward | more than 5 years ago | (#28270983)

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...

Clone Kit anyone? (1)

OrangeMonkey11 (1553753) | more than 5 years ago | (#28271305)

I'm waiting for the first do it yourself clone kit

Major Breakthrough! (1)

electricprof (1410233) | more than 5 years ago | (#28272391)

Does this mean that in Tennessee I will finally be able to find out if I really am my own first cousin?

Mn's infant DNA Mayo-Gopher industrial complex PDF (1)

HongPong (226840) | more than 5 years ago | (#28274991)

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 [politicsinminnesota.com]

Get 100 MB super-multifile-PDF here - OCR'd
http://www.politicsinminnesota.com/files/infant-dna-combined-doc.pdf [politicsinminnesota.com]

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...]

Re:Mn's infant DNA Mayo-Gopher industrial complex (1)

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