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My deadly disease was just a 23andme bug (mntmn.com)
516 points by mntmn on Nov 25, 2013 | hide | past | web | favorite | 318 comments



I'm surprised at the negativity here. There is nothing conclusive about this test and from what I've seen it does a pretty good job. So one guy got some bad indicators that proved to be nothing, who cares?

My father did 23 and me, without giving any family medical history and it concluded that my father was at a much higher risk factor for things that his mother was ultimately afflicted with. So, it works to some extent.

On the flip side, long story short, I had a CT scan done on my chest that checked out fine, but the doctor that reviewed it said I might have and unrelated problem - Patent Ductus Syndrome. Nothing heart surgery and a lifetime of supply of Coumadin couldn't fix. A few months later I got an Echocardiogram which conclusively said the doctor was wrong.

Quick, stop doing CT scans!!!??? Are we're all so afraid of our own shadow that heroes at the FDA need to protect us?


"Are we're all so afraid of our own shadow that heroes at the FDA need to protect us?"

Well, yes. You can try to make it look like a bad thing by using loaded language, but yes, the whole point of the FDA is to protect us from problems like this.

Medicine is complicated. It's also a very poor fit for free markets, because it tends to be filled with monopolies and because free markets require informed participants and the extreme complexity of medicine makes that impossible for most.

Historically, large numbers of people and companies have had no compunctions with taking advantage of this to defraud a lot of people, frequently while causing them pain or death. The FDA is intended to fix that. It may not succeed, or may not succeed well, but yes, this stuff is dangerous and we are afraid of it to the extent that we want an agency to protect us.


It's also a very poor fit for free markets

Yeah, just look at what (nearly) free and open markets have done to things like vision correction surgery. Quality has gone up exponentially while prices have dropped by one to two orders of magnitude. Those free markets are awful.

The problem with medicine isn't that it isn't a match for free markets, it's that there are no remotely free markets in the space.


This is ridiculous and you know it.

If vision correction surgery is too expensive for you, you can wear glasses or contacts instead and be totally fine. There is actually market pressure to drive prices down and quality up because there'd be less money to make otherwise.

Demand for treatment of a life-threatening, painful, or debilitating disease does not depend on the price or the quality. It's not free market at all because consumers have no choice but to buy at any price.


  > Demand for treatment of a life-threatening, painful, or debilitating disease does not depend on the price or the quality. It's not a free market at all because consumers have no choice but to buy at any price.
If this were true, wouldn't this be true: Demand for [food, shelter,..other necessity..,] does not depend on the price or the quality. Markets for this good can never be free because consumers have no choice but to buy [food, shelter, etc.] at any price.

Don't consumers always have a choice at least to the degree with which they have choices of whom to by from?


Food and shelter are classic examples of necessary goods which the government provides through taxation to those who can't afford them.


Government subsidization would only put more upward pressure on prices though. And yet, food does not cost infinity dollars. I wonder why?


Inelastic demand doesn't imply infinite price as long as there's competition among suppliers.

Government subsidies on the demand side would put upward pressure on prices, but government subsidies on the supply side put downward pressure on prices, and there's a lot of supply-side subsidies.


I tend to agree, but to be fair, some of this would be mitigated if the market were truly free. For example, the lack of competition issue would be largely resolved in the absence of patents that grant long monopolies to single companies.


The government doesn't produce them or set the price, they merely buy them. It's still a free market.


You're talking about demand, which is orthogonal to competition. There are plenty of inelastic demand industries which are still quite beneficially served by competitive markets. And that includes things in the realm of goods and services that are quite literally life saving.


≥ If vision correction surgery is too expensive for you, you can wear glasses or contacts instead and be totally fine.

As someone who had lasik to correct a 9 dioptre astigmatism/myopia, I can tell you there is a world of difference between prosthetic correction and native correction. It's not just in terms of comfort. I can see better than I did with the perfect prescription glasses. I have a much wider viewing angle. I don't have to worry ever again with lens angle rotation.

For high corrections, glasses are anachronic, and should be considered the wrong treatment.


The problems that medicine has with free markets apply least to elective, cosmetic procedures like laser eye surgery, and that is naturally where market forces have had great success.

There are plenty of free markets in other sorts of medicine out there, just not in the USA. They are often very good if you have money, thorough information on the provider, and enough time to take advantage of it, and atrocious otherwise. That's not the sort of system I want to have where I live.


The question which follows from this is whether your idealism gives you the right to coerce others into living by your rules.


It may not succeed, or may not succeed well, but yes, this stuff is dangerous and we are afraid of it to the extent that we want an agency to protect us.

It may not work, but we want an agency to protect us.

Lots of people make similar comments regarding the TSA.


Lesson being, the world is shades of gray, you don't just call all government good or bad unless you want to be spectacularly wrong and confident about it. The world's realized that the communists were idiots who thoughtlessly caused a lot of suffering when they got their way, why don't the libertarians learn the obvious lesson? Blanket ideology ratcheted up to 11 leads to really bad ideas.

On the particulars -- the TSA has never caught an actual terrorist. The FDA has stopped potentially harmful and/or ineffective drugs from coming to market. Anything could be improved and, given drug research costs, there's probably a lot of room for improvement at the FDA. But "let's abolish it because ideology" doesn't fly. In 23andme's particular case, they seem to have an extremely mild and common-sense set of requests that could be fixed at the disclaimer level.


>>the TSA has never caught an actual terrorist. The FDA has stopped potentially harmful and/or ineffective drugs from coming to market<<

This is an excellent example of the "seen" vs. the "unseen". Sure, the FDA has stopped harmful and/or ineffective drugs from coming to market. But the FDA has also stopped plenty of effective drugs from coming to market, both directly (e.g. no more Vioxx because it might slightly elevate your risk of heart attack) and indirectly (the billions of dollars it costs, directly due to FDA requirements, to bring a drug to market).

Is the assurance that FDA-approved drugs are safe[1] worth the inhibited advancement of medicine? I don’t know, but I doubt it. I think a much wiser approach would be to have potential drugs freely available, and subject to testing by third or quasi-third parties (ala Underwriters Laboratories). Hell, you could even leave the FDA in place if you want to, only limit its ability to restrict drugs to market. For example, you could reverse their decision-making criteria: FDA will only pull drugs from market if it can be shown that the drugs are more harmful than beneficial for their intended use. This would leave the choice to use a certain medication to individuals and their doctors, with guidance from FDA/labs who conduct the same sort of testing the FDA does now.

[1] Note that the FDA’s stamp isn’t really an “assurance” anyway. Vioxx (and loads of other “harmful” drugs) still made it to market.


Nothing's an absolute assurance, mistakes happen in all walks of life.

If you're talking about streamlining the FDA process without significantly increasing the risk of harmful drugs slipping through, I think everybody's in favor of that.

If you're talking about streamlining the process at the cost of higher risk, then that's probably a nonstarter. Why? I (and most people) am not willing to increase my odds of being harmed on behalf of someone else's profit margin. You'd have to be crazy to accept that deal.

Expecting the market to 'just do your research' on drugs is crazy. It takes experts with PhDs a long time to verify a drug as safe, and they still make mistakes sometimes as you indicated... you're expecting me to do it? I haven't taken chemistry since high school.


"If you're talking about streamlining the process at the cost of higher risk, then that's probably a nonstarter."

For me that's not a non-starter. It's the start of a process that involves looking at just how much money gets saved (and by whom), just how much additional risk is borne by those taking the passed medications, and how much faster we're getting new (safe enough and effective enough) drugs on the market.


I should have slid in the word 'significantly' like I did in the previous sentence.

You're willing to take significantly more risk that a routine drug prescription harms/kills you in order to streamline the process for drug companies? (Note that there already is a process in place for those with advanced diseases that justify a high-risk drug to take experimental drugs with knowledge of the risks).


Without pinning things down quite a bit more into specific proposals, I'm not willing to do much of anything. I'm just saying that sometimes increased risk for decreased money and increased time can be a good trade-off, and any given proposal should be evaluated on its merits.


Sure. If the proposal is "government is tyranny, abolish the FDA!", there aren't any merits, the proposal is fundamentally unserious and comes from a place of deliberate ignorance. That's the kind of idiocy I was objecting to.

Any realistic proposal (as in, we have an idea of how much extra risk we're incurring) is going to have a lot of technical details and probably require a huge amount of research to justify it -- it's human lives that we're talking about here. The potential $ savings are big but that doesn't matter if you're dead. Like I said way upthread, there is plenty of room for improvement, but "libertarian pixie dust will make everything better automatically" is the same thought process that led to collective farming and killing 10s of millions in Russia and China.


Savings doesn't matter if you're dead, but the other side can't be ignored either. If those billions permits more competition and leads to new drugs, that too can save lives.

We need to do what we think is most likely to lead to the best outcome. There's a point beyond which that's no longer "more research", at which point researching more isn't taking it seriously. I have no particularly strong feelings about just where we are in that space - I'm busy saving the world along other lines.


>>If you're talking about streamlining the process at the cost of higher risk, then that's probably a nonstarter.<<

I hate to be that guy, but this is the fallacy of false dilemma, and directly ignores the example I gave above.

>>I (and most people) am not willing to increase my odds of being harmed on behalf of someone else's profit margin. You'd have to be crazy to accept that deal.<<

This isn't the deal. Do you feel that your odds of harm from taking a supplement are significantly too high, since of course supplements are not currently regulated by the FDA or any other government body? Are people who takes supplements crazy?

>>Expecting the market to 'just do your research' on drugs is crazy. It takes experts with PhDs a long time to verify a drug as safe, and they still make mistakes sometimes as you indicated... you're expecting me to do it? I haven't taken chemistry since high school.<<

Why is it crazy to expect the market to do research? This happens with literally every other product available. There are thousands of organizations dedicated to reviewing automobiles, blenders, mattresses, and literally every product you can buy. If people voluntarily want to purchase medicine that has not been evaluated by the FDA or some other testing organization (as is currently the case with thousands of medical supplements that are for sale) why must those people be stopped? Again, the choices aren't FDA approval or no access. There are all sorts of solutions that could be implemented to both increase availability of medicine while still offering consumer protection.

Yes, PhDs make mistakes, but that wasn’t the point of the Vioxx reference. Vioxx was a fantastic pain drug that worked for some people when nothing else would. And that drug was taken away because Vioxx might increase the risk of heart attack. While this may sound fine to you, it was devastating to many people who would have preferred even a large risk of heart attack rather than living with the pain eliminated by Vioxx. (Vioxx was thought to increase the incidence of heart attack a staggering 4 times in one study . . . from .1% to .4%)

Again, nobody is expecting you to do your own research. But that shouldn't limit our options to (1) FDA approval or (2) no drugs for you.


> the TSA has never caught an actual terrorist. The FDA has stopped potentially harmful and/or ineffective drugs from coming to market

Bingo. Mistakes happen, but different government agencies, different companies, different individuals do have varying degrees of success or failure.


What a vapid comment. Can't come up with a good argument so you just loosely associate with something you think is bad. Great addition to the discussion.


Or any agency. A mother state isn't wrong. It doesn't do things without some merit for some people. It's just that the hand holding is frustrating to the more independent of us (including me) who would rather take risks and be freer.


Finally, some honestly; yes it's frustrating, but given that the vast majority of the population aren't like you, it makes sense that they set up a society to cater to their needs, and it's pretty clear most prefer a paternalistic government simply to remove the need to think about so much stuff. Most people don't want a world where a bad decision about something they don't have the knowledge to even make correctly can kill them.


That said, I do have a problem with it's conclusion.

We gave up the monarchy system (to a degree in Western Politics) because a privileged class can never truly choose the correct course of action for subclasses.

We replaced this with a pseudo monarchistic, pseudo technocratic, representative democracy, yet all our problems with War, Poverty, Oppression, and Moral Decay continue unabated.

We're at a pivotal point in our history, where we're coming to the realization that democracy doesn't work, and that we're either going to have to commit to some consistent narrative, or perish while we convulse with confusion over the increasing chaos.

If you ask me I wasn't saying this system was by any means proficient in it's duties to any degree. I was just pointing out that some/many people simply don't care, in other words, they are apathetic. And why not? Individuals can't communicate at the communal level like they used too, and we have no power against bureaucracy.

That said, we only live once. It's no use trying to make the world a better place for the next generation, the one after that, or the one after that. Humans will go extinct in the future. Nothing will remember us on this mortal plane after 1 million years. The things we bicker about are profoundly insignificant to the universe. IMO, we don't merit existence outside of this planet if we can't feed the people we have on this one. Let's not spread suffering amongst the stars with us.


War, Poverty, and Oppression are better today than they have ever been at any point in history. Moral Decay is far too vague and subjective to be usefully compared, but since it is often used as an excuse for Oppression, I feel confident in saying that it's an excellent thing if it is continuing unabated.


> Moral Decay is far too vague and subjective to be usefully compared, but since it is often used as an excuse for Oppression, I feel confident in saying that it's an excellent thing if it is continuing unabated.

I meant the decay of the family during child rearing. The skyrocketing divorce rates since the 2nd world war. The increasingly consumerist yet more alienated individual. Our society that tells our children that women are sex objects, and that ALL men are perverts or rapists. A society that cares more about celebdom than the starvation and suffering within it's borders. A society that disdains racism/intolerance, yet still disenfranchises millions of Native Americans and black African Americans.

I'm not trying to say you subscribe to those things. Just clarifying my point that our competitive/psychopathic society has consequences. As someone who cares about morals (not an American republican, but rather a Canadian Leftist) I think this will only carry our system forward.

Trust me I don't really care if we're lead as a society by authoritarianism, it's just that I'd rather we utilise that system of government's speciality (efficiency) and attempt to use the current resources we have to develop space technology that can mine efficiently. If not, then let's just live freer happier lives while we can?

I'm not disagreeing with governance, just federalism/nationalism/globalism. Let's just run cities? More of a say, more of an impact, and no one else to blame but your own community. Besides, I know that where I live, towns nearby won't raid us. In fact, we'd probably form some confederacy, and share some- dammit! I created a federal government again...

I don't have the answers. But there's plenty of problems (the first step is admitting it!). If you can't see a bleaker future than our grandparents did, than you're not seeing what I see in the next 40 years.


Divorce rates did indeed rise quickly after WWII, but they peaked around 1980 and have been going down ever since.

Most of the rest of your points are subjective and verging on nonsense.

I won't argue that the system sucks a great deal, but the fact is that things are improving and have been for quite a long time.


How are things improving? I'm guessing you live in some bubble land where everyone has a great life. San Francisco?

War, Poverty, Oppression, and Moral Decay are more of a problem than ever. Don't mix up my points with social progress, which is an awesome achievement of our society. My moral decay lies more in trust in general and in the institutions we have to trust to function effectively.

War is continuous, with constant tension to this day. Iran and US peace deal for 6 months? Well, looks like Saudia Arabia and Isreal have teamed up to change that? Eastern European Rocket Grid for Rogue States in the area, justification Iran not needed says "Putin"? Fuck you says US/American Narrative of not liking Russians. Chinese and Japanese conflict over islands? Better not attack Japan China, The US has a defensive treaty with them. That would not be a good thing for anyone.

Poverty is continuous. Personally, I find it despicable that some people can live as billionaires with some thousands of children dying needlessly from diarrhea and malnutrition. Sure donating helps, but surely a system that allows such disparity surely something like this isn't shocking... Not to mention the increasing amount of individuals in the US who rely on food assistance (which may be cut by this improving system)...

Oppression need not even be mentioned. Surveillance, Propaganda, the Prison Industrial Complex... You may have heard about the innocent man being forcefully given cavity searches / colonoscopy surgery / etc without probably cause in the US this past month? If not, http://www.youtube.com/watch?v=YWg_JyJJqaU. System is definitely improving. Who needs the 4th amendment...

And lastly, again, moral decay. I'll modify my point to be less nonsensical for you. The fact that this all happens, and people like you say things are improving, given what we see as innovation everyday? That sounds like a decent amount of cognitive dissonance to me! The first step to a non philosophical based moral ground, that can justify/defend a horrifically immoral system, because fuck everyone else, it's comfortable here where I live. To bring up a popular meme, you should check your privilege.


You're romanticizing the past, we're not on a downward decline, things are improving constantly. Poverty, war, oppression, these things aren't new, and they weren't somehow better in the past unless you were white and the loss of that white privilege somehow feels like things got worse.


Have you actually looked up the historical level of death due to war and historical rates of poverty? Both have been going steadily down for a long, long time.

But you seem to be immune to facts....


What rates? The 20th Century was the most brutal period of war in our entire history. More than 40,000,000 people died in world war 2 alone. That's a low estimate... http://en.wikipedia.org/wiki/List_of_wars_and_anthropogenic_...

But you would think it's more important that we have a lower per 1000 rate would you? Personally, every death to me is a shame, and 40,000,000 in WW2 alone, and us having continual war since 2001 creates an outlook of more war in the future. Don't fool yourself into thinking we couldn't beat that record...


You reject relative measures and only measure death in absolute terms? You find a world with a trillion people in which a billion are killed in war to be worse than a world with a billion people in which 90% of them are killed in war? Like I said, impervious to facts.


Modern war is more destructive than previous ones. Even fifty years ago genocide was a laborious task, now it is done with a press of button. There is nothing more deadly than total war.


Then setup a ratings agency to make decisions for those people who want to outsource their judgement to a bureaucracy. Don't prevent those of us who want to make our own decisions (which may at times simply be to defer to some other knowledgable 3rd party besides the FDA whom we trust more. Point is, #choices)


Your mistake in your argument is in assuming that making the choice to abdicate making decisions to lessen risk actually lessens the risk.

There is also the very solid argument to be made that by choosing to lessen risk, you stifle innovation and produce an overall much worse system in terms of beneficial outcomes.


The mistake in your argument is assuming people are good; they aren't, without oversight innovation isn't the result, scams are, by the truck load. The FDA exists to protect unwitting consumers from bad people, not to spur innovation. For every innovator freed by lack of regulation thousands of con men exist that'll flood the market with crap that hurts people, far more than any possible innovation is likely to save. Lessening risk is far more important than not stifling innovation because the simple indisputable fact is that bad people vastly outnumber innovative people.


Are regulators not people? Are they infallible? Are there no obvious market mechanisms that will punish con men peddling their inferior products?

Lessening risk is far more important than not stifling innovation

I don't think this unqualified statement makes sense. Shouldn't the opportunity cost of the benefits of innovations not produced, weighed against the risks present in allowing a market to produce them, play a factor? And this would no doubt be different for each and every possible innovation.


> Are regulators not people

No. They are robots. Robots that know better. How dare you ask such good questions! You now owe us 40$ for violating my authority citizen!

> Lessening risk is far more important than not stifling innovation

Again, would the OP rather live in a world with 100% risk, 100% innovation, or 0% risk, 0% innovation. I know what I'd choose. There's a pretty common theme in some sci-fis that living without risk isn't even life. Something to think about...


Doesn't 100% risk imply that we die immediately? Not really "living" then.


But the 100% innovation would fix that instantly... You broke my horrible if or else argument!

I took it more as being 100% responsible for your actions. But also yielding 100% control of those decisions/creations.

But your point stands. Both options yield death. One instant and real, the other grey and indifferent.


We don't all share your faith in the market; it's as simple as that. Until you understand that, you won't understand those who don't agree with you.

> I don't think this unqualified statement makes sense.

It wasn't unqualified, it had a context that you removed, I'm specifically talking about the medical market, not just any random innovation.


IMO gnaritas lacks the understanding I'm sure we both share in his reply to this message:

That con men don't disappear with regulations. They simply become regulators and monopolists.

> The mistake in your argument is assuming people are good

So let us give control over some people, to others! That fixes the problem with the human condition (http://en.wikipedia.org/wiki/Human_condition)...

> without oversight innovation isn't the result, scams are, by the truck load.

I'd take thousands of small, grassroot scams, that can be corrected through communal means (boycotting and community awareness) than by one huge one. If the Fed sanctions a pharmaceutical drug that kills thousands, is that worse than a few peddlers selling whatever drugs they want like what currently exists under the nose of the Fed? If you ask me, some illegal drugs are less harmful than legal ones! And that's pure free market with a dash of mafiosa government resistance (guns, extortion, other things to become powerful to fight the powerful).

> For every innovator freed by lack of regulation thousands of con men exist that'll flood the market with crap that hurts people, far more than any possible innovation is likely to save.

And yet, while the FDA didn't exist in the centuries preceding 1906, the formation of the FDA, we see innovations saving lives, and more and more people living meaningful existences. I doubt any community of people would be stupid enough to continue to consume harmful chemicals to degree that harms more than of it harms us now. These organizations exist, yet childhood obesity is the highest it's ever been. Americans consume alcohol, tobacco, fast food, and drugs live they always have. These things haven't be struck a blow one bit by regulation. They've simply become more expensive, and the big man in town takes their cut.

> Lessening risk is far more important than not stifling innovation because the simple indisputable fact is that bad people vastly outnumber innovative people.

Big red flag that we're not arguing with someone logical. "Bad people"... Like who? The Nazis? Or maybe the Jews? You can use this hatred/disgust/mistrust/contempt/negative energy for so much evil/bad/badder/worse!

Why is lessening risk more important that innovation? We've reduced a tremendous amount of risk in the last 100 years. From labour laws to life expectancy to homicide. Can we please stop feeling like we need bureaucrats to run our lives? I'd love to ask gnaritas whether they would prefer a society with no risk and innovation, or a society with massive risk and massive innovation. Arguing even for the status quo puts you in the more favourable side IMO at the get go.

I also love how they class people as either bad, or innovative, as I'm sure they dream of some sort of utopia where you either create something of worth before the age of 12, in which you would become a part of the ruling, innovative class, or not, in which case you are controlled by that class.

But yes gnaritas you're right. Please pass more laws, more regulations, and create more prisons and fines so we can deal with all of these bad people! In fact, I think I just violated regulation g.r.a. 101 - You cannot challenge the authority of someone who knows whats best for you!


> That con men don't disappear with regulations. They simply become regulators and monopolists.

I'm not sure that's the best way to get your agument taken seriously. The FDA are conmen now?


I'm just saying that powerful roles with attract power hungry people. Most regulation positions in banking and telecommunications are generally seated by previous company execs... So what's the difference in this particular regulatory body? I would definitely not make the blanket statement that MD's are always good people. I'm sure some can be pretty devious or ignorant to their (powerful) decisions.


Powerful roles do attract power hungry people. You know who else they attract? People who have some skills and want to put them to use for the betterment of society.

Not all policemen are corrupt, not all politicians are stooges, not all regulators are conmen. Quite often they are people who know how the system works and feel that they can bring their knowledge to bear to make it work better and ensure that things are done right.


I'm just critical of power and it's obligations. At many points in history, with enough power people can be made unaccountable. With less power, comes more accountability.

This is why personally I think it would be better if we released medicines and simply had "FDA approved" status post release/post approved by the institution, which would give people the choice to only use FDA approved products, but also give me the choice of utilizing other drugs I can research and make decisions about on my own.


Understood. That's a much more plausible view than your original posting.


He's an Ayn Rand worshipping objectivist, you can't reason with him. His view of people is as shallow as hers.


Not at all. You're the one who stated that people are inherently bad and that they need to be controlled. I don't agree with Ayn Rand at all.

I just believe in freedom and liberty: http://en.wikipedia.org/wiki/Libertarian_socialism.


They do? I haven't seen it.


> Medicine is complicated. It's also a very poor fit for free markets, because it tends to be filled with monopolies and because free markets require informed participants and the extreme complexity of medicine makes that impossible for most.

Functioning governments (at least, modern "state of the art" republican democracies) also require informed participants, and the extreme complexity of government makes that impossible for most voters (not to mention irrational; see "rational ignorance" on Wikipedia). People often accurately point out well-known inadequacies with markets, but I've never seen an explanation for why people expect republican democracies, which are themselves public goods, to be exempt from the same market failures.


That's an interesting question and I'm not sure I have a particularly good answer for it. I would say that there is something about how the system arranged that makes it so that people within the government are in general incentivized to serve the people despite those problems. But even if I can't say why it works, I would say that it seems clear enough that it does, if your government is set up well. There are problems and it doesn't necessarily work particularly well, but overall it does work.


I don't think the incentives for politicians are really there, at least not on an individual levels. Most politicians at a national level do not rely on their government salaries for sustenance, so the obvious incentive to be re-elected isn't there. As for the incentive to be re-elected due to desire for power, that's a more promising idea, but even then, the rational ignorance point means that the getting re-elected is not the same as "being judged by the people as a good servant of the people."

As for the evidence that governments work, despite a satisfactory economic model for why they should be expected to, I don't personally see the evidence. I see a lot of evidence the support the claim that governments are overwhelmingly likely to exist, but not that they are the "best" way to organize society (for any given definition of "best").


It works for the same reason a well-administered datacenter does: because the professionals tasked with maintaining[1] it are assiduous in so doing.

[1] http://xroads.virginia.edu/~Hyper2/CDFinal/Lippman/cover.htm...


The economic mechanism that causes well administered datacenters to exist is clear: there is demand for hosting and a (mostly) competitive market attempting to supply hosting. Poorly administered datacenters have a lower chance of staying in business. But if there was a legal monopoly on datacenters (e.g. only the government could provide hosting, and citizens voted on the leadership of the datacenters), I am not aware of an economic mechanism that would cause the datacenters to satisfy demand efficiently or at all.


Well, yes.

Well, no.

Many of us want government out of the way of our own informed decisions. Government is just other people, not deities.


Come now. We don't have a society in which everyone is equipped to debug a company's website for them. The point of oversight in medical markets is to manage the risk that innocent people are victimized by a company's mistakes, negligence, or pursuit of profit.


As the government seems at least equally incompetent to debug their own medical market website, you're making my point while millions are being victimized by a government's mistakes, negligence, and pursuit of profit in medical markets.

The USA was founded on the premise of liberty: that individuals have rights which may not be dictated by the self-righteous and/or greedy whims of the majority & powerful. Now get government out of my health care, which served me very well during times which I could be dead four times over.


Sorry, what? I can tell you're trolling, but the thread is discussing FDA oversight of sales of medical products. Are you suggesting that the USA was founded on the premise of snake oil sales? This has nothing to do with a medical market website. You seem to have conflated a number of issues and generated quite a bit of confusion for yourself. Sorry I can't be of more help.


Did I suggest that the USA was founded on the premise of snake oil sales? No. You're misconstruing what I plainly said just so it's easy to dismiss it.

I don't mind a government oversight as a matter of openness and standardization. I do mind government exercising power for its own sake, ordering a business to cease & desist when the service is using new technology to help people be better informed (WITH clear caveats that the information is suggestive, not authoritative).

I worked with your examples (website, consumer victimization, etc) and observed that government is equally as guilty as you construe private business is, and from there questioned why you respect one and demonize the other.

So long as 23AM makes clear their offering is not to be construed as actionable medical advice (suggestive, but not definitive by any means), the FDA should not be ordering them to stop service under threat of penalty/arrest.


That cuts both ways, of course. Government is just other people, not demons.

Anyway, you're right and I certainly didn't intend to speak for everyone. I was just pointing out that the attempt to caricature the current state was not really a caricature but just the way we actually do things.


The FDA isn't meant to stop snake oil. See all of the perfectly legal alternative medicine out there. And this is far from snake oil. They are meant to protect against dangerous drugs. They even do that badly. I remember seeing a statistic that more people die from drugs being delayed from going to market than are saved by preventing bad ones. The high standards also make new medicine and innovation ridiculously expensive, though it's debatable whether it's worth the cost.


> it tends to be filled with monopolies

All monopolies in medicine and insurance are government created.

Your whole argument is based on a near-obvious circular logic.


> So one guy got some bad indicators that proved to be nothing, who cares?

The people who get incorrect results and who then go and do things based on those results - don't have children or do have surgery or etc.

> Quick, stop doing CT scans

You have a CT scan when there's something wrong and you need a diagnosis. Pre-emptive CT scans are not recommended. That's because there's so much stuff that might show up but which is totally harmless. But, because you've seen it now you need to do something about it, and those tests carry some risk. Just the stress of "shadows" is considerable. See, for example, CT scans that show rubella scarring, which is something the patient would not know about until they get the CT scan.


> The people who get incorrect results and who then go and do things based on those results

A person who makes life decisions based on tests conducted through the Internet is gullible.

No amount of government intervention will keep this person from a world of pain and misery.


It sounds like you misunderstand the 23andMe service. TESTS aren't conducted "through the internet" they're conducted in the 23andMe lab by analyzing your saliva and hence your DNA. Your RESULTS are available "through the internet", which is the equivalent of a clinic emailing you the results of your blood tests.

I think it's fair to question the validity of their technology (if the Illumina chips and matching algos are doing their job), but that's a different argument.


The technology actually isn't in question here; Illumina has entirely earned its preeminence in the field of DNA sequencing. That part of 23andme's process can be trivially duplicated in any sequencing lab, including the one a hundred feet thataway from where I'm sitting right now. Merely sequencing a genome and identifying SNPs is as close to a solved problem as anything in the explosively emerging field of bioinformatics.

What's in question is the validity of 23andme's analysis, and that's an entirely different matter. Bioinformatics is, again, an emerging science -- expanding at an amazing rate, to be sure, and full of enormous promise for the improvement of human health overall, but nonetheless still in its nascency. Treating bioinformatic analysis as an established part of medicine, to the extent of making "highly confident" (23andme's words, not mine) predictions of future medical concerns based on analysis of a relative handful of SNPs, strikes me as flagrantly optimistic at the very best, and potentially verging upon fraudulence at the worst.

That's the FDA's concern, and if anything it is only reinforced by the OP's experience. Were 23andme's analysis and predictions anywhere near the level of reliability the company claims on their behalf, it would not be necessary for one of their customers, having been terrified half out of his mind by the results of 23andme's analysis of his genome, to develop sufficient understanding of sequence analysis to replicate their process and identify their error.


Much of the FDA's purview is protecting these kind of people.


Yup. It's a Sisyphean task. You can't protect a person from themselves.

The FDA should focus on requiring disclosure of relevant information and the accuracy of that information, rather than guaranteeing safety or making value judgments.


>The people who get incorrect results and who then go and...

From a $100 test? I hope not. In my father's case, he wears sun block now. What he didn't do was run out and have every mole on his body removed because he's at greater risk of Melenoma.

>Just the stress of "shadows" is considerable.

I lived with that stress for a few months. I'll admit it was in the back of my mind, but I was fine.

Afterwards I was telling a friend about the ordeal and he actually said "Man, is there anything worse than being told you have something terrible wrong with you, living with that, then finding out it was a false alarm". Uhm, yeah. How about finding out it wasn't?


> From a $100 test? I hope not

Look at Morgellon's; Mercury Chelation; Anti-vaccination; etc etc etc.

There are very many people willing to sell tests, and very many people happy to sell quack cures based on those tests. (I'm not saying that 23andMe are quacks!)

> "Man, is there anything worse than being told you have something terrible wrong with you, living with that, then finding out it was a false alarm". Uhm, yeah. How about finding out it wasn't?

That's happened to a few people. You get told you're HIV+ (in the late 90s, when this means it's a death sentence.) You lose your job (because people are arseholes), you stop showing your 8 year old son affection (because you're scared of the infection), you have unprotected sex with people with HIV (you're already +, so what does it matter?) and then you get told that there was a mistake with the original test and you're actually negative.

http://www.amazon.com/Reckoning-Risk-Learning-Live-Uncertain...


> ... you have unprotected sex with people with HIV (you're already +, so what does it matter?)

That is a bad idea, even if you are 100% certain the result was correct.

https://en.wikipedia.org/wiki/HIV_superinfection


> That's because there's so much stuff that might show up but which is totally harmless.

I've heard this argument but I don't buy it - not at all. I consider it better to know than to be ignorant.

If everyone has something that looks like rubella scarring, why is something that looks like rubella scarring considered worthy of investigation?

If the risk of something worse justifies investigation, then it's better to know from the CT scan so that you can have it properly investigated. If there's no such risk, then no problem.


> If the risk of something worse justifies investigation, then it's better to know from the CT scan so that you can have it properly investigated. If there's no such risk, then no problem.

But the "risk" only exists because of the CT scan, which is returning junk data.

Because a doctor has seen the junk scan, has seen the shadows on the junk scan, they now have to recommend follow up scans to rule out any disease. That subjects the patient to risk - hospitals are not safe places to be in. (Hospital acquired infections kill many people! Clinician errors kill many people! Traffic accidents getting to hospital kill many people!) Just being worried about the tests is going to cause a deterioration in most people's lives. And there's zero benefit for almost all of those people.

Early intervention is not always better.


Forgive me for being mathematical in order to make my point:

My hypothesis is that having more information cannot result in a worse average outcome, given a rational response to the information (correctly accounting for relative risk). As a doctor, I do not have to recommend follow up scans if the cost is greater than the benefit, but I should still seek to use the information from those once they've been done.

I suggest that the above holds true even if there is some known chance that the information is junk.

To put it more simply, early intervention is always better.


> My hypothesis is that having more information cannot result in a worse average outcome, given a rational response to the information

Rational response to shadows on the lung in a CT scan is more scanning and more testing. The results of the further tests carry a risk. The benefits are zero for anyone without a disease, and low for anyone with a disease. That's a worse than average outcome for almost everyone taking those extra un-needed tests.

> No, early intervention is not always better.

There are many men who've had traumatic treatment for prostate cancer because of the results of early intervention style treatments. Many of those men would have died with, not of, prostate cancer. Thus, their lives have suffered because of a rational response to an early intervention.


We treat a doctor who doesn't order an x-ray (say) to investigate a possible symptom and thereby misses something important far worse than we treat a doctor who orders an unnecessary x-ray and thereby increases the patient's lifetime cancer risk - even when the former action was objectively better for the patient (that is, the life expectancy of the patient is higher in the no x-ray condition).


> Are we're all so afraid of our own shadow that heroes at the FDA need to protect us?

Hi, physician here. No, that's not why you need the FDA. You need the FDA to protect you for all sorts of reasons. It is not possible for a non-physician to be an informed healthcare consumer. Everything from not marketing methamphetamine to high school students, to ensuring your brain doesn't get cooked by a bug in a CT scanner's software.

There are a lot of ways to die. But on a scale of 1 to 10, death is an 8. Wait till it's your kid.

I had a conversation with a libertarian friend of mine recently:

Me: "If you like libertarianism so much, why not just move to Somalia?"

Him: "Hey, just make sure you're the one with an AK"

Me: "Who's standing watch when you sleep? Where are they looking?"


> It is not possible for a non-physician to be an informed healthcare consumer.

I never fail to find myself astonished that people in a highly technical field, which is extremely refractory to the layman, nonetheless commonly feel themselves perfectly competent to operate in another highly technical field, entirely orthogonal to their own. The Renaissance man, made obsolete by complexity, is one with history; specialization is the order of the day.

There is no controversy in the statement that not everyone is, or can be, equipped to serve as his own programmer or systems administrator; indeed, the very existence of the field in which most of us find our vocation suffices to demonstrate that fact. Yet many of these very same people consider the mere suggestion, that the same should be true of the field of medicine, as nigh unto an insult direct -- as though it carried some imputation of essential incompetence, rather than being a statement of trivially evident fact. I despair of ever understanding why this should be, live however long I might.


> It is not possible for a non-physician to be an informed healthcare consumer

It's also not possible for a physician to be informed about every possible condition. I have type 1 diabetes, and I know a lot more about it than my GP does -- odds are she's only going to see a handful of T1Ds in her career. When I'm talking to her about my diabetes, I'm educating her rather than vice versa. (So she sends me to an endocrinologist, and he's as far ahead of me as my GP is behind me in knowledge of diabetes.)


> It's also not possible for a physician to be informed about every possible condition.

You are absolutely right. The one thing we definitely know is that we're still a long ways off from even having the books written on it all, let alone any one human having even majority of the information in their brain. I'm in pathology, sort of the end of the diagnostic road. We have the molecular tests and microscopes. And we still don't know. In fact, we're best positioned to see the vast ocean of unknown before us. We can't even see the other side.

Sorry to hear about the diagnosis, you've done extraordinary things despite it and I hope more patients can emulate your success. I am constantly educated by my patients.

You're not Canadian, are you? The GP vs endocrinologist issue is actually well-studied there. Unsurprisingly, the specialist-treated patients fair better.


Yes, I am Canadian -- although I had the luck to be diagnosed while I was at Oxford. Having one of the world's leading research institutions in the field (OCDEM) in your back yard helps a lot where clinical care is concerned...


>It is not possible for a non-physician to be an informed healthcare consumer.

Are you sure, because I used webMD to diagnose my spontaneous pneumothorax. Went to the clinic told them as much, they laughed. Finally ended up doing a chest x-ray after which a very stern faced doc walked up to me and said, "Sorry, we've never seen this here before. You need to go to the hospital right now."

That was the longer part of the story about the ct scan which was done post-recovery to look for blebs.


Same thing here. Personal story short, I discovered--thanks to the internet--that having hypothyroidosis and taking L-Carnitine [1] can cause rhabdomyolysis and acute kidney damage.

3 doctors completely missed huge warning signs and prescribed strong antibiotics in spite of the fact that there was no evidence of infection.

It was only thanks to my being an informed healthcare consumer that I prevented a very bad weekend.

I think it's possible for non-physicians to make informed decisions. I would also say that many want to have someone to blame. In my case, though, blaming someone doesn't help much when your kidneys die.

I'd argue that a $100 DNA test is not a diagnosis tool. It's like a friend looking at your skin and saying 'hey, you should get that mole checked out'.

[1] In the form of Pantothen, the "Natural Acne Cure". Yeah.


>I'd argue that a $100 DNA test is not a diagnosis tool.

I'd argue the same. But that's not in the slightest how 23andme presents itself.


Your story only reinforces his point. You still went to the hospital. You still had test and what not done. Sure , you were informed about a specific part, but after that, you went to professionals you trusted.


Marfans Syndrome?


>"If you like libertarianism so much, why not just move to Somalia?"

This is a bit offtopic, but how about "because it was terrible before the collapse of their government, and still is terrible?"


No, it's an excellent, beautiful place. Because it has no government, and therefore must be, by libertarian definition. Don't you understand? There is no Somalian FDA - which means all you have to do if you want to consume safe food or drugs is to enlist a local food and drug testing company to test things on your behalf. Perfect capitalism! No government interference!

And yet libertarians don't move there. It's baffling. Every single U.S. libertarian talks a great game, but not one of them is willing to put their money where their mouth is.


Just like North Korea. It's a perfect, magical place. Confiscatory taxes and monetary policy ensures near perfect equality. Full employment. Free government health care. All state run media, no Murdochs or FOX News. All businesses run by the state, no exploitation. The lowest domestic carbon emissions in the industrialised world. A vibrant cultural scene that is free of corrupting American imperialistic influences.

And yet leftists don't move there. It's baffling. Every single U.S. big government liberal talks a great game, but not one of them is willing to put their money where their mouth is.


That is actually a great argument to use on anyone who espouses the virtues of a totalitarian, all-controlling state.

The difference is that you can actually find people with some frequency who espouse the virtues of extremely small or entirely absent government, while it's pretty hard to find someone who espouses the virtues of a totalitarian, all-controlling state.


You're correct, of course. The problem is that libertarians doesn't agree that "extremely small or entirely absent government" leads to Somalia and suggesting that they move there is thus the purest of straw men. I just attempted to return the favour.


Well then the onus is on them to show why Somalia is not a good example, I'd say. Somalia had no government for a decade or two. Since there aren't really different ways to organize "no government" (what with there being no entity to organize anything) then surely there's no room for any differences.


> Well then the onus is on them to show why Somalia is not a good example

I don't see how that follows. Extraordinary claims require extraordinary evidence. You got out of North Korea by hand-waving that nobody explicitly wants a "totalitarian, all-controlling state" - yet the libertarian argument is that the constant push to have the government control more and more parts of society constitutes clear, if inadvertent, steps towards exactly that.

Also, the point raised isn't about whether Somalia/North Korea is a libertarian/statist paradise, it's why libertarians/statist don't move there. The answer is in almost all cases, "because I don't want to".

That said, Somalia being unpleasant has a lot more to do with it being extremely poor and ravaged by civil war than is has to do with a lack of government. But in the stateless period, a good number of things improved significantly, despite the lack of government: http://en.wikipedia.org/wiki/History_of_Somalia_(1991%E2%80%...


Well, that's a different kind of person altogether. We're talking about people who think the ideal state is one with no government at all (as evidenced by the fact that the guy claimed to be cool with moving to Somalia as long as he was armed). The people who merely think that government expansion beyond the current size might be bad are totally different and considerably more sane.


No, that's the same person. There is nothing inconsistent in believing that no government is the ideal and that more government leads to a totalitarian state.


I don't understand what you're saying. If a person expressed the opinion that Somalia would be a good place to live because it has no government, it's pretty reasonable to ask why they haven't actually moved there.


So you'd think. A former lover of mine once told me she was sad that the Soviet Union had collapsed. Blew my mind.


Quite a few people were net worse off after Soviet Union collapsed. I.e. if you had a secure job in some obscure government funded research institute, guaranteed income, free medical care and education for your kids, but now it's free market and no one is interested, so the institute is closed. Sure, there is now abundant food in the shop and you're free to travel abroad, but you have no money and at 40+ years old it's hard to start a new career.

Or maybe you are retired, etc.


Presumably the GPs lover was a young, western woman, and only inconvenienced by the collapse of the Soviet Union in an ideological manner.


Yes, exactly.


This is ridiculous. No one has ever claimed a free market would instantly create a perfect utopia overnight, just that it would be better and improve more over time.

In many areas Somalia did significantly improve compared to it's past government and is better off than the countries around it.

https://www.youtube.com/watch?v=3TTOsWym-dI

Additionally only a small percent of libertarians are anti-statists and want the government gone completely.


> it's an excellent, beautiful place. Because it has no government, and therefore must be, by libertarian definition.

I'm not sure if you're serious. If you're not, I apologize.

If you are, please show me someone claiming that "no government absolutely implies an excellent, beautiful place." Most of the libertarians I know recognize that a place without a government can still be a hellhole. Like Somalia.


There are many different degrees of "libertarian". In case you haven't notices, politics isn't all hard lines and absolute extremes of the spectrum. Also be sure to not confuse libertarian with Anarchist.


I'm told this is why doctors don't typically go on "fishing expeditions". They could order an array of tests every time you go for a checkup. But given the false positive rate combined with only vague symptoms (eg. occasional headache, stomach ache, joint pain), which could be almost anything - it's frowned on to go looking unless there are very specific symptoms or large degrees of discomfort/pain.

Of course in a health system where every check and scan can involve large amounts of profit...


Definitely true that labs/imaging without good pretest probability or indications are frowned upon. The check everything mentality, at least to me, seems to reflect liability concerns for serious missed diagnoses as opposed to profit scheming. Many of these fishing expeditions are in emergent care settings where the hospital ends up eating most of the cost.


Yeah I was probably being a little snarky there. I'm sure that the vast majority of doctors, even in profit-making systems, are just trying to do the right thing. But there's no reason the less scrupulous ones couldn't be doing it for both reasons ;)


I'm sure that the vast majority of doctors, even in profit-making systems, are just trying to do the right thing.

This 2009 article looks at what happens when doctors invest in medical facilities. It doesn't even have to be overt, it's just an incentive that can warp the perspectives of even the most patient-focused doctors. McAllen Texas has the 2nd highest medicare costs in the country, but the next town down the road is much closer to the norm. Guess what the difference is...

http://www.newyorker.com/reporting/2009/06/01/090601fa_fact_...


This is actually a stats 101 issue. Imagine that most tests only had 5% false positive rate, then if you took 20 tests then chances are at least one of those is going to give you a false positive.


To be pedantic on stats 101, the chance of having at least one false positive is actually (1 - (.95^20)) ~= 64%, because it's 1 - the probability of every test not having a false positive.


Man, that's not pedantic. That's the critical insight that demonstrates someone is competent to talk about stats at all. I wish more people would take the time to point that out when people make the OP's error.


In fairness, ig1 just said "chances are...", meaning the odds are better than 50-50.


Yes.

But no-one is going to remember "solve x for (1-(.95^x)) > 50" the purpose of the 95% & 20 is that it's easy for people to remember.


Thank you.


[deleted]


False positives (and even true negatives) have non-zero cost.

http://articles.mercola.com/sites/articles/archive/2013/03/0...


False positives can have a ton of very negative effects. There is the monetary cost of further testing, which can be high depending on what is being tested for, and most importantly, telling a bunch of people that they have some particular disease when they don't is really bad. They may become more stressed, which can bring about a whole host of problems, people might start telling family members, and start getting their affairs in order, they might make different financial decisions based on these false results. And its actually very difficult to administer these tests in a way that doesn't results in way way more false positives than true positives.


Arguably this attitude is a contributor the problem of antibiotic resistance.


We expect our employers to triple-check everything they say in the fear that they might say something that could possibly be construed as sexist or racist or harassing. Our teachers aren't allowed to offer our children honest critiques for fear that they'll crush their poor little self-esteems.

A genetic diagnostic can completely crush a person's outlook on life. This is suicide-level stuff potentially.

As for your doctor, do you still happily use that doctor and recommend them? The scan wasn't the problem; the service provider was. Ditto for 23AndMe. They don't get a free pass because they're a "tech" company.


Yeah, all doctors, as humans, and systems, as machines, make mistakes. What counts is statistics, and negligence. Are stats about this test/doctor worryingly bad compared to the average? Are the mistakes caused by negligence? If not, I'll happily use that doctor/service again.

I have far more problems with the growing perceived need to have employers triple-check everything they say, teachers avoid honest critiques and distrust any new technology that kills N people when the old one killed 10N (re: Tesla fires).


> We expect our employers to triple-check everything they say in the fear that they might say something that could possibly be construed as sexist or racist or harassing. Our teachers aren't allowed to offer our children honest critiques for fear that they'll crush their poor little self-esteems.

Some people do these things. But I believe that they are overreacting, and from your phrasing so do you. So why are you proposing that health data be held to such absurd (and unhealthy) standards?

> A genetic diagnostic can completely crush a person's outlook on life. This is suicide-level stuff potentially.

Then the person has serious mental issues. I'm not saying that hearing you are susceptible to a serious disease should slide off like water from a duck's back, but if a person feels that learning a medical diagnosis may cause them to commit suicide, then under no circumstances should they engage a company like 23AndMe that clearly states up front that they will NOT be providing counseling.

As far as I can tell, no one INCLUDING 23AndMe is proposing that they get a "free pass". In this case @mntmn reported their error to them and they corrected it, not just for him but for ALL future patients. That is better than most doctors do when THEY find an error.


When a doctor misinterprets the results, it can be mentally destructive for everyone, even if you're completely stable. When my dad's doctor told him he had cancer, it completely changed all of our family gatherings. Thankfully the diagnosis was wrong (it was some hospital paperwork mess-up), but in a short period of time, all of us were contemplating about losing him. I considered quitting my job so I could stay with him.

It's definitely a good thing to get a second opinion from another doctor, but misinformation does have the capability to crush everyone's lives.


The difference between CT scans and 23 and Me is that CT scans have been tested and the rate of false-positives and false-negatives is generally known. In addition, the manufacturers of CT scanners are making claims based on this data.

What the FDA is upset about is that 23 and Me is making claims with no scientific basis. Sure, they are measuring gene's known to be associated with certain conditions, however, their tests have not been validated. That is the kicker.

The funny thing about this is that HN is notorious for its hatred of the pharmaceutical industry. If a drug company ever did what 23 and Me did, it would have been raided by US Marshall's and had it's door chained shut. The FDA has been incredibly patient with the company so far.

Take a look at what pharmaceutical companies have had to put up with: http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulat...

A simple ad that suggests patients might do better if they switch to Effexor XR, which, in fact, they might. The FDA sent a warning letter because the ad "contributes to the impression that patients who have failed previous antidepressant therapy can expect improvement when switching to Effexor XR when this has not been demonstrated by substantial evidence or substantial clinical experience."

This is not regulatory capture or anything of the sort. Pharmaceutical companies have been putting up with the high evidence hurdle for the last few decades. What makes 23 and Me think it can play by different rules?


Yes well done, seeing that article actually made me order scans for entire family.

Why? Because at this point technology seems fairly stable if public outcry is directed at easily correctable and easy to miss during implementation bug. This is `future` tech right here - you get a glimpse into your own DNA. What kind of Engineer would I be if I was not a little bit curious about it?

Note: I am firm believer in Eugenics, so I might be a bit biased.

Edit: there seems to be a confusion about Eugenics, so to clarify I do not believe in Negative Eugenics/Positive Eugenics (which is not letting people breed/letting only fittest breed). What I believe in that if given a choice of 2 partners (Does not matter who, your choice), if you pick the one who will minimize risk of the offspring inheriting genetic diseases, that is enough to make positive progress in Humanity's gene pool. If at least fraction of people follows that logic, it should be possible to measurable reduce inheritable diseases within few generations.


> I am firm believer is Eugenics

Eugenics means requiring inferior people to not reproduce. There are some problems implementing this requirement. Do you mean something else?


> There are some problems implementing this requirement.

Diplomacy score of 100


I am not into eugenics, and I'm not the poster you're responding to, but eugenics, as a theory, is perfectly harmless, until such time as one begins imposing eugenic criteria for others.

Given his interest in his own genetic data, and his interest in eugenics, it could well just be that he sees himself as less likely to reproduce if doing so would be to pass along a detrimental illness or genetic abnormality.


> ...eugenics, as a theory, is perfectly harmless, until such time as one begins imposing eugenic criteria for others.

Which becomes nigh-inevitable once eugenic theories are readmitted to the discourse, because once you postulate that individual reproductive behavior has a detrimental effect on society as a whole, it becomes a public health matter. As is trivially obvious from the history of the century just past, that particular slope is very steep and very slippery, and it leads into a crevasse whose contents are horrifying indeed.


Only in situations where society has power over individual choice, which, I grant up front, is exactly the society we have in America.

To put it into perspective though, Michael Bloomberg recently attempted to ban the sale of large sodas in New York City. I, as a personal choice, do not drink soda, because I believe it's the devil, basically. That said, that is only a personal choice.

I agree that it's obviously detrimental to society on the whole, but so what? I'm not beholden to society on the whole, nor is society beholden to me. The idea that we should ban soda, even if we know that it is bad for society, and even if we know that it is bad for the individual, is antithetical to freedom, and a practice which I don't support.

All that said, I agree that we live in far too controlling a society, and this is exactly why I oppose the notion of socialized health care; which is that as more of society is involved in my medical choices, more of them have incentive to eliminate every unhealthy thing that I might do (and vice versa). Despite the fact that I am a very healthy individual by most standards, I don't want my freedom to drink the occasional soda evaporated by those who mean well.


>Only in situations where society has power over individual choice[.]

That is every situation in which exists something fairly describable under the name "society".


There are degrees in which society must suppress an individual's impulse in order to maintain cohesiveness, and so long as that control is limited to ensuring that everyone's rights are upheld (meaning, I have all freedoms that do not infringe on your rights), then nobody's ever anything more than irritated.

It's only when a society tries to impose value judgements on others, and to be fair, they almost always do, that unfairness creeps in.

Regardless, I think we're fairly far afield of the original discussion, so I'll demur on this.

To circle back around though, the idea that one should optimize for genetic advantage with his or her own offspring is no more offensive than when I volunteer at soup kitchens to help the less fortunate.

Compelling either situation though is (at least in my opinion) quite wrong-headed indeed.


Or you pick a partner with DNA to minimize chance of inheritable genetic diseases by offspring.


Exactly

The point, really, is that eugenics itself is not necessarily evil until and unless you attempt to control the reproductive rights of others by your own eugenic criteria.


More easily said than done. :\


> Eugenics means requiring inferior people to not reproduce

Not necessarily. Saying "you have the BRCA gene... here, have some free birth control pills" would be a eugenic policy, but it's not forcing anything on anyone. The same goes for PGD: It allows parents to have children who lack a "bad gene" and thereby improves the genetic health of the population, but it's not compulsory.


Note: I am firm believer is[sic] Eugenics, so I might be a bit biased.

You might want to explain that a bit further, before you get associated with the tragic events of the early 20th century and downvoted into oblivion.


The GP could mean any of several things, none of which have to do with those events (EDIT: he means 1 and the converse-corollary of 3):

1. Auto-eugenics: the ethical obligation one feels, when one knows they have horrible DNA, to adopt instead of breed.

2. Eugenic engineering: currently, this means "do IVF, look at the zygotes, and pick the healthiest ones to try to implant." In the future, this could involve genetic patches from healthy donors ("gene cleaning") or just plain hacked-in transhuman bonus features.

3. Eugenics, under the original botanical definition of the term: pairing people with really great DNA, and encouraging them to breed as much as possible, and repeating this process over several generations. We already vaguely do this naturally by interpreting health-signals like height or breast size as indicative of mating potential, and we're doing it more explicitly when we select good sperm/eggs from a donor clinic to pair to our own. (The final sci-fi-ish step in this one would be for women to volunteer to/get paid to/pay to (depending on supply vs, demand) "adopt at conception" genetically-"optimized" children matched by the clinics themselves. This would probably be in addition to the gene-cleaning techniques from 2.)

Oh, and I guess I should mention this last one, which is closest to the "problematic" version but which, surprisingly, has been attempted to success (i.e. Nobody being unhappy with the arrangement):

4. Libertarian eugenics: Pay people you'd be afraid of reproducing, to not have kids any more. This could be a state rent-transfer, but it's also possible to make it an entirely bottom-up process: any individual activist with some money to give can do their own "vigilante eugenics," finding, say, crack-addicted mothers and offering a lump-sum to get their tubes tied[1]. And this has happened: http://www.radiolab.org/story/251887-what-if-no-destiny/

Really, "the bad eugenics" is a ghost from the past, more an artefact of Nazi beliefs about racial purity than any productive approach to solving the problem.

---

[1] Okay, this is less "eugenics" and more "euteratogenics" plus a little "euepigenics." But we're making people here, not show-grade Dalmatians; we care about more than their potential as good breeding stock.


Or a simple and "ethical" explanation - make sure partner you are getting offspring with has DNA that minimizes chance of inheritable diseases. If everyone follows same logic in a few generations inheritable diseases would be less dominant.

In particular let's look at OP's example - he has mutations in different genes, so he is not is risk group for the disease that 23andme mistakenly reported him for. However if he would have an an offspring with someone who has complementary mutation in same genes, the offspring would stand much higher chance of inheriting that disease.


I don't know about you, but it's rather hard to ensure that your partner has the "right mix". It's hard enough to secure a mate as is! :)

Instead, I suppose the suggestion would, "Well, go adopt!", which is a less than satisfactory answer for probably like 99.9% of all of the public, seeing as how nobody bothers to get a "genetic checkup" before they reproduce, and we're pretty much wired to prefer our own offspring to others when it comes to parental investment. All in all, the only context I've ever really heard these sorts of conversations in seem to be surrounding people who have terrible conditions that they are afraid of passing on, not two otherwise healthy individuals who have no idea whether or not their offspring could inherit some kind of genetic disorder that it latent in them. Yes, that is the problem isn't it? Also, given the amount [read:lack] of effort in "planning" that some people seem to put into reproduction, I wouldn't be surprised if this remains the problem...forever.


Is it? Fundamentally this is just a search problem. Pair up 23andme with a dating site and match only people with below certain threshold of possibility* of an offspring having genetically inherited diseases.

* Let's say on average you have 10% chance of having your child inherit something bad. If you show only partners that have this value halved over time you will see a positive trend.


It's interesting you blame the Nazi Reich for "the bad eugenics", as you name them. The Nazis got their eugenic ideas, whole and entire, from the United States[1], where a eugenics movement born and nurtured in California was remarkable even among the well-meaning but disastrous social engineering movements of the Progressive Era. I strongly encourage you to read the linked article, and given the evident depth of your interest in the subject to further study the volume from which that article was drawn.

For example, you may have heard of Buck v. Bell, a 1927 Supreme Court decision which affirmed the constitutionality of involuntary eugenic sterilization. (Holmes: "Three generations of imbeciles are enough.") The Nazi eugenicists, when brought to account at Nuremberg after the war, mounted a defense which revolved around the American eugenics movement in general and this Supreme Court decision in particular.

For further example, perhaps you share the common misconception that the idea of mass execution for eugenic reasons, and the particular method of using gas chambers for this purpose, originated in some uniquely twisted mind among the Nazi eugenicists. This is not the case; that purpose, and that method by which to achieve it, were first postulated in a 1918 Army textbook, which drew inspiration from a 1911 Carnegie Foundation-funded "Preliminary Report of the Committee of the Eugenic Section of the American Breeder's Association to Study and to Report on the Best Practical Means for Cutting Off the Defective Germ-Plasm in the Human Population."

As you see, the United States has made this mistake once before, even to the extent of enshrining it in our highest canon of law. The Nazi regime, far from originating these ideas we now recognize for the horrors they are, merely took them to their logical conclusion; in judging the entire Jewish race an intolerable blight upon the genetic purity of a nation, and acting in accord with the vanguard of then-modern eugenic theory to prevent that blight from spreading further, the Third Reich demonstrated conclusively and incontrovertibly the fundamental inhumanity of the entire eugenic concept. In that demonstration, the modern objections to eugenic ideas find their origins and their vehemence -- this latter, in particular, perhaps all the more telling in a society whose disinterest in the hard-won lessons of history seems to grow by leaps and bounds.

Consider, too, that the leading exponents of eugenics in decades past were every bit the equal of anyone today in their conviction that they were the intelligent and enlightened wave of the future, and perhaps you may find it easier to understand how your "ghost from the past" could -- given enough arrogant confidence that we know enough not to repeat past mistakes but may this time rely upon ourselves to do it right -- turn out a vicious revenant after all.

[1] http://hnn.us/article/1796


Sure--the reason the US has such a strong image of the Nazis burned into its cultural psyche, is that, in our minds, we were almost them. Totalitarian eugenics was the zeitgeist among the progressives of the 1930s and 40s, growing directly from the just-recently-settled implications of Darwin; and America, as in many other intellectual movements in the 19th and 20th centuries, was one of the central participants in the discourse.

However, we never did any eugenics. We thought about it: explored, in all its Consequentialist glory, every facet of the avenues available to us at the time; had our strategists and think-tanks outline hard-nosed evaluations of the pros and cons of such actions; but, then as now, it never came to anything. There was no top-down governmental push to force sterilization, or death, by active selection from the population. And as far as I can tell, with the way the US government is designed, there could be no such push; there isn't an arm of the government from which it could legitimately originate.

Even without the Nazi example to reflect upon, the deepest into depravity the American system would likely have sunk would be something like sterilizing entrants into our dystopian prisoner-industrial complex. :)

---

Seperately, I must just point out, your last paragraph reeks of Reactionism[1] -- just because we were wrong, does not mean that we will be wrong in perpetuity, and there is no reason to flinch away from even evaluating the consequences of things like eugenics when those consequences are constantly changing alongside advances in technology.

There may come a point where there will be no negative consequences at all -- a point when, say, a mother can just take a pill to ensure that from then on she will conceive completely genetically-healthy children. To flinch away at that point would be madness. The question is, how close must we be before flinching away is not madness, but just sub-optimal in the net-present-value of global DALY[2]? And how close are we now?

[1] http://slatestarcodex.com/2013/10/20/the-anti-reactionary-fa... or to summarize http://dresdencodak.com/2009/09/22/caveman-science-fiction/

[2] http://en.wikipedia.org/wiki/Disability-adjusted_life_year


"We never did any eugenics."

I always hate, in argumentation, to approach the realm of personalities -- but you strain credulity, not to mention Hanlon's Razor, far beyond bearing. Did you read the article I linked in the comment to which you replied? Have you ever read anything on the subject of the American eugenics movement? Or do you argue from this blatantly false premise in support of some ulterior motive? Perhaps you are ignorant; perhaps you are malicious; perhaps you are both. The facts of the matter being what they are, you cannot possibly be neither.

"We never did any eugenics."

Your third paragraph beggars belief even further. Perhaps you aren't aware that in California, the eugenic sterilization of prisoners was not made illegal until 1979 -- and the practice itself continued until three years ago.[1] And there's far worse in the history of American eugenics -- circa twenty thousand free men and women sterilized, at the order of eugenics boards which judged them unfit to reproduce, in the state of California alone. Twenty thousand! Are they not enough for you to acknowledge this atrocity for what it is? How many more do you require?

"We never did any eugenics."

The most generous assumption I can make is that your argument originates in a combination of dewy-eyed optimism regarding the advancement of human knowledge, and abysmal ignorance regarding history so recent it's barely left the category of current events. Even then, your argument remains morally repugnant in the extreme -- you argue, in essence, that the American eugenics movement was and remains utterly blameless, pure and innocent of any wrongdoing, because after all it was the Third Reich, not the United States, who in accord with the soundest eugenic theory committed enormities hideous enough to rate among the very foulest blemishes of our species' far from stainless history.

Had the Nazi eugenics programs arisen de novo, had they been the entire invention of Nazi theorists working from Nazi first principles without any relation to the eugenic theories then in American vogue, you would have a point. But they did not; ignore it though you may, it remains established and incontrovertible fact that Nazi eugenics were in every sense an outgrowth from, and a development of, American eugenics -- and not merely in the realm of pure theory; the early Nazi eugenics programs received not merely intellectual support, but actual funding, from such luminaries as the Rockefeller and Carnegie foundations.

American eugenicists trained Nazi eugenicists, collaborated with them, supplied them with funds, encouraged and abetted them in every possible fashion on their way to enormities such as "Action T4" -- a bloodless name for the eugenic murder of a third of a million unfortunates, that of course being only the figure known with certainty and very probably short of the real number of victims -- and even the scourging of the Jewish race itself.

On an individual level, such behavior might be called complicity to murder, perhaps conspiracy to murder, perhaps accessory before the fact of murder -- among the very gravest of crimes, even on that small scale. The same, scaled up to the level of whole societies, beggars description. And there you stand, bright-eyed and smiling, and blithely insisting that American eugenicists, American progressives, are pure as the driven snow, smirched by not the tiniest drop of the lakes and rivers and oceans of blood spilled in the name of their abominable theories. Our forebears, in their foolishness, unleashed horror beyond description and beyond compare. When they saw the enormities that resulted, it made them wise, and they laid down the tool which had turned so disastrously in their hands. Yet there you stand, smiling, ready to pick that tool up again. Tell me, how many millions will it take this time, to make you as wise as those who've gone before?

Oh, but of course, you cry, it won't happen that way this time! After all, we're so much better and smarter now than anyone before, and we will be ever so careful not to repeat the Nazi horror! And I have no doubt that's true. After all, we're so much better and smarter now than anyone before! And so, too, will be the new horror you unleash, and always with the most unimpeachable of good intentions:

"We never did any eugenics."

---

Precisely what you mean by "Reactionism" I am not sure. I am no longer young enough to love chaos, and I am reasonably familiar with recent history; I suppose this might make me look reactionary on some subjects and from a certain point of view, but I have never since childhood dreamt of dignifying any opinion I might hold with a name involving either a majuscule or an "-ism".

Your links, I'm afraid, shed little light on the matter. The comic strip, while well executed in a technical sense, had no obvious point; I did get a little way into the Slate Star Codex page, but found myself unable to continue past the point where its author, for the sake of narrative convenience, defined "violent dispute" in such fashion as to exclude the American Civil War.

[1] http://www.theguardian.com/commentisfree/2013/nov/08/califor...


I wonder were on the spectrum of eugenics this foundation belongs: http://www.jewishgeneticdiseases.org/


I believe there is no such thing as "downvoted into oblivion" any longer. Still, the point about Eugenics is valid: even without the unfortunate associations with the events of the previous century, the term is rather vague.


Since when does choosing your own partner in a way that minimizes the risk of your children inheriting genetic diseases "Eugenics"?

For god's sake, it's like saying you're a proponent of Nazism because you think model rocketry is a good hobby. And you wonder why people are confused?!?!?!


That's what eugenics is, at its core. Whether or not one imposes beliefs of eugenics on others is another matter.

"the study of or belief in the possibility of improving the qualities of the human species or a human population, especially by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics)"

http://dictionary.reference.com/browse/eugenics?s=t&path=/

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


There is no "what it is", just what people understand the term to be. It is, quite frankly, stupid to use a term as loaded as "Eugenics" and then get upset when people don't manage to realize that you're using it to mean something completely different from what it's commonly understood to mean.


Godwin's law, pal..


The lesson here is don't use shoddy diagnostics. CT is a proven technology, which gets things right the vast majority of the time, and also has a false positive rate. 23andMe is relying on technologies or algorithms that have not undergone the requisite scrutiny to lose the label (in the FDA's opinion) of "shoddy diagnostics", and are thus far more likely to have a higher false positive or false negative rate.


Isn't the lesson here not to rely on any one source of diagnosis?

There have always been differing medical opinions, so allowing patients to cheaply sample many in order to rapidly get to the end is better than having a one off rarely in practise used test because it's prohibitively expensive.

The FDA are simply enforcing the medical industry monopoly on diagnosis. You can expect any potentially disruptive effort along these lines to also mysteriously fail to ever be approved.


> The FDA are simply enforcing the medical industry monopoly on diagnosis.

23andMe could sell their product as not being diagnostic. Since 23andme chose to sell their product as being diagnostic it's fair enough that their held to the same level of regulation as everyone else in the sector.


They explicitly did not. From their TOS:

As a result of the current state of genetic knowledge and understanding, our Services are for research, informational, and educational purposes only. The Services are not intended to be used by the customer for any diagnostic purpose and are not a substitute for professional medical advice.


The TOS is irrelevant if they're elsewhere making diagnostic claims.


I think the takeaway here is stop worrying about your health at such a silly level. Live a good healthy lifestyle, free from stress, smoking, have a balanced diet, plenty of exercise.

If you go in search of a "diagnosis", you'll get one. Everyone will.

23 and me is an awful thing to do IMHO. It preys on people and turns them into hypercondriacs (For a fee).


Unless you're adopted and you want some sort of information where you have none. In that case, isn't it prudent to attempt to gather data on your genetics?

It's extremely frustrating when doctors/nurses/PAs ask me about family history and I tell them I was adopted. It shuts out an entire channel of potentially helpful information.


For what little it's worth am somewhat surprised at the naive misrepresentation shown by many here of what the FDA does, how they do it, and what they are actually expressing in this case.


I am with you. This is objective information about your own body. The government wants to block it because it assumes you can't handle the information.

Ridiculous.

They are not selling any proposed cures. No snake oil. Just information derived from your own DNA.

And the story speaks WELL of 23andMe. They had a bug. Someone reported it. They fixed it. It's a great report.


This is a poor argument founded on a handful of anecdotal experiences. The full reality of the situation is not embraced by your caricature of it.

I think you might have a bit of a different opinion if you had been incorrectly diagnosed with a more serious disease, such as cancer.

As a thought experiment imagine that I am a medical charlatan who is offering a test for women to find out if they have breast cancer. In truth the test is just a random chance of a positive diagnosis, dressed up with some props and procedures. What's the harm in this? Well, the harm is that you put someone through hell when they believe that they have cancer. And worse the harm is that it can often take some very invasive procedures that have a deleterious effect on health to conclusively determine if someone does have cancer or rule it out.

Which makes a false diagnosis more than just a mild scare but a very real burden. And also a drain on the health care system and the economy. Someone who undergoes unnecessary procedures, such as biopsies and blood work, will have those costs come out of their insurance most likely. Those costs come out of effectively a pool of money designated for covering procedures, shrinking that pool means that someone else will be denied coverage for some procedure or that premiums will go up for everyone.

Now one need not be an intentional charlatan as in the above example to nevertheless lead to the same harmful outcomes unintentionally. And that's the sort of thing that can, and apparently does, happen with 23+me. If people are getting told about "risk factors" for very serious diseases through tests that are not very reliable or diagnostic then that will likely lead to a lot of unnecessary procedures in order to double check those findings. With all of the problems resulting listed above. This is a problem that the medical establishment has to contend with even with highly accurate tests.

So yes, it is actually a serious problem with no easy solution. That doesn't mean that 23+me has to stop operating, but they need to be substantially more circumspect about their diagnoses.


"I'm surprised at the negativity here. There is nothing conclusive about this test and from what I've seen it does a pretty good job. So one guy got some bad indicators that proved to be nothing, who cares?

My father did 23 and me, without giving any family medical history and it concluded that my father was at a much higher risk factor for things that his mother was ultimately afflicted with. So, it works to some extent."

In both cases. The plural of anecdote is not data, and it's singular form is equally vague.


The difference here is that even though CT scans might be useless, at least the pictures themselves are accurate. Whereas 23andme told me that my ancestry was a mix of Nigerian, Japanese, and Iranian. Then suddenly two years later they decided I was 99.9% white. No explanation given, they didn't even send me an email, I just showed up one day and found out that I was a different race, and suddenly the genetic risks of what I was supposed to be worrying about were completely different.


CT scans cost $500-$4500 in the United States. Heart surgery easily costs over $100,000. Given your cavalier attitude toward the enormous costs of the health care you received, I'd argue that you're not the one that needs protecting.


"My father did 23 and me, without giving any family medical history and it concluded that my father was at a much higher risk factor for things that his mother was ultimately afflicted with. So, it works to some extent."

Whaat?


sure, quit doing CT scans if false negatives or, more importantly, if false positives rate are too high.


If the banning of CT scans would save just one innocent life, it would be worth it.


How many innocent lives the banning of CT scans would kill?


And now you're starting to get it.


Only if the ban didn't kill more people than it saved, which it likely would.


>So one guy got some bad indicators that proved to be nothing, who cares?

>Quick, stop doing CT scans!!!???

Are you really this stupid? I think you're pretending to be stupid.

Yes, bad diagnosis is kind of a big deal. Yes, new, unlicensed, untested medical devices are kind of a big deal. Thanks for your completely unrelated, probably fictional, personal anecdotes though. I'm sure someone was swayed by your emotionally charged, whatever story about something whatever, but I'm surprised, because one time I got a rental car and it told me it was out of gas but it was wrong, I went to another dealership and there was gas! Quick, stop filling up cars at the pump!

Who upvotes this shit? Seems like there is a conspiracy to prevent legitimate and intelligent conversation around any medical issue by stupid, distracting comments and pointless bickering about issues that aren't even remotely related to the OP.


Strange, I looked for your intelligent comments, but found nothing.

Have you taken the 23 and me test? Seen the results? Are you adopted and know nothing about your families medical history? Have you ever been misdiagnosed by a board certified doctor using an FDA approved test that costs thousands of dollars? Ever use webMD to self diagnose a condition that nearly killed you?

So you have something intelligent to say, great, tell us. Maybe include some experiences that inform your opinion so we can better understand where you're coming from.


Strange, All I see is more ads for 23andme.com and a lame attempt to scare me into using it.


Still waiting...


Now consider that this is a marketing message that wants to have it both ways: it alerts clients to genetic "risks", which are very likely to be subjected to secondary testing, but does not want to be liable for the accuracy of its negative results, which are very unlikely to be challenged.

It would be better if 23AM presented medical genomic information in a neutral way, with external links to descriptions of genomic variations but no assertion of diagnostic significance at all, or even a mention of how to obtain a diagnostically significant result.

Unfortunately, the way 23AM is packaged (see the website), they are incentivized to do the opposite; positive results are recognized by their clients as valuable, and, whether 23AM likes it or not, so are the negative results.


Here is a company who is trying to make genetics more accessible, approachable, and comprehensible.

> It would be better if 23AM presented medical genomic information in a neutral way, with external links to descriptions of genomic variations but no assertion of diagnostic significance at all, or even a mention of how to obtain a diagnostically significant result.

What you're suggesting would effectively revert the consumer experience about half a step above "go to lab X to sequence your DNA, then hop on over to SNPedia.com to figure out what it all means."

> Unfortunately, the way 23AM is packaged (see the website), they are incentivized to do the opposite...

Perhaps this is more subjective than worth talking about, but that's not the impression I had when using and working on the product. All the more reason they need to be careful, for sure.

Disclaimer: I worked at 23andMe's frontend team briefly, a few years ago. While I have mixed feelings about their engineering practices and other things, I do believe in and support their mission.


"Here is a company who is trying to make genetics more accessible, approachable, and comprehensible"

No, it really isn't. It's trying to make a mass-market product that it can sell to unsophisticated end-users who don't have a prayer of understanding what they're seeing. Accuracy and precision are secondary concerns, and without those you're not actually doing genetics, but pseudo-science.

I have a number of friends who have received 23's "analysis", and come to me to interpret all/part of their results. They're garbage. You shouldn't take any of it seriously, in any way. To properly interpret even the simplest parts of their report, you need a background in statistics and genetics that only highly trained people have. And even then, there's usually not enough information -- you need to do tons of digging into the literature to find out that some relative risk increase is highly conditional on population or that the original experiment was flawed in some subtle but important way.

As they say: things should be made as simple as possible, but no simpler. There are things that are complicated for a reason, and you can't just discard the inherent complexity and claim it as a virtue. It's not disruption to be irresponsible.


It is impossible to read 23AM's current website and not come away with an impression of the tool's clinical ambitions. I strongly buy into the idea that everyone working on the product is doing so with the best intentions and I'm thrilled to be living in a time when products like it are available at its price point. But their marketing is incautious and might need to be tuned up.


> But their marketing is incautious and might need to be tuned up.

You're probably right. Unfortunately it's too easy to create a gap between the public-facing marketing messaging and the real spirit of the product. I can think of many companies who struggle with this.

If you do become a customer, it's evident that they perform an admirable effort to make the results appear as neutrally educational as possible. Every data interpretation is heavily cited and explained, all the while urging further clarification from a medical professional. (Let me know if you'd like some screenshots.)

Personally, this is above and beyond of what I would expect, and there are competitors (especially foreign) who do far less. I can see why the FDA would prefer to have everything that could be interpreted as medical advice to be regulated and controlled, but I'm not convinced that it would yield a net benefit to consumers in this case.


What would be wrong with offering a product that sequences your DNA, then highlights the most interesting bits with links to external sources? A customer would still get the benefit of knowing high-risk/important things to check out, and 23AM would be clear. The website could wrap it up to make it a smooth experience.


Probably nothing.


Well, sure. That's because dispositive results are valuable to their customers. It's not a marketing problem: they have someone (some) people want. Saying that it would be "better" that they not provide this service seems to be an odd usage of "better".

The liability concern is real: they aren't perfect, they'll goof up tests, and in some measure (though IMHO largely overstated -- the real risk here is a little fear and a needless diagnostic procedure) people will suffer when they do. But that doesn't seem to me to be insoluble. If no one insures that kind of thing right now then maybe they could be induced to, or 23AndMe could work up something on their own via investors.

But arguing that the only viable solution is to shut down a comparatively cheap and (full disclosure: I'm a customer) really quite entertaining service seems wrong to me. It's a net good; some people (hi!) like it.


> But arguing that the only viable solution is to shut down a comparatively cheap and (full disclosure: I'm a customer) really quite entertaining service seems wrong to me. It's a net good; some people (hi!) like it.

That's not what's happening. You're not stupid, and I'm surprised you see it this way.

23andMe are being asked not to market their product in the way they are marketing. Or, if they want to continue to market like they are they have to have the same level of regulation as all other medical device suppliers.

Neither of those stop you from using their product.


OK, the language was inflammatory and I apologize for that bit. But the point stands: it's not a "marketing" problem that they are providing pseudo-diagnostic results. That's what the market wants, because they can't get it from the existing products under the existing regulatory structure.

One way to see this is yours and the FDA's: it's a fairness issue, and they need to play by the same rules. The other is the liberstartuptarian line that the regulatory structure is the thing actually at fault here. In this case, I tend to agree with the latter.

I mean, I had fun with this service, and I wasn't fooled by its marketing: they told me in essence that they'd give me their best guess at my traits and disease risks and drug susceptibilities, etc... And I bought it. A product that just gave me a bunch of genes and markers I could look up on wikipedia wouldn't have gotten my money.

So what's the answer here? Where's the regulatory answer for those of us who want to spit in a tube and get a fun HTML5 experience out of it? It doesn't seem like the FDA has one.


> That's what the market wants, because they can't get it from the existing products under the existing regulatory structure.

The market can have that, all 23andMe has to do is stop selling their product as a diagnostic test.

They sell it as being able to predict your risk of some diseases. They're not a tiny little startup battling against the industry, they have some pretty big money.

They need to either sell it as a novelty ("Not designed to treat or diagnose any medical condition") or step up and get regulated.

Unfortunately we're in a weird situation where 23andMe get regulated, but wingnuts like Sarah Myhill (in the UK) don't. http://drmyhill.co.uk/wiki/Nutritional_Supplements_-_what_ev...

So I definitely agree that something's wrong.


> The market can have that, all 23andMe has to do is stop selling their product as a diagnostic test.

Or, alternatively, perform and submit the studies to show that, used as directed, it works as a diagnostic test as marketed.


They could slap on a disclaimer saying 'Results for entertainment purposes only. This service has not been evaluated or approved by the FDA.' I'm no expert on regulatory law but I suspect this would immunize them from most oversight...but I also suspect it would have a deleterious effect on sales.


I think they would have to remove much of the product too. The FDA is involved because they consider the product to be "intended for use in the diagnosis of disease." I doubt they could say, "our data shows you have disease X but this is for entertainment purposes only."


You're right. They're not going to be able to say "our data shows you have disease X". They probably have no business saying anything of the sort.


Nobody is arguing that it should be "shut down"; even the FDA doesn't appear to be doing that, and is demanding that they cease marketing only after years of effort trying to alter the product's marketing message.


Well, I still like it, too, in a way. It's just a bit unnerving sometimes. I have this feeling that the technology is still a bit in its infancy.


That's exactly right. There is, at this time, no such thing as "medical genomic information", of the sort which 23andme purports to provide. There is a great deal of data, but that's not the same thing, and distilling that into information is an entire field of study -- complex, subtle, enormously recondite, and extremely refractory to the layman.


I've used 23andMe and I feel that this is how the information IS presented.

When I click through my profile, it shows me strength of assumptions based on the number of conclusive or inconclusive studies that have been reported. You can easily click through each result and see the studies.

I never once felt that they were making a diagnoses. I don't know where people are getting this from.


23AM just got a smackdown letter from the FDA about that:

http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2...


That letter was linked from the article itself, and is what prompted the fact that this discussion is happening now.


Compare it with Carfax and similar "car history" reporting websites. A positive result is nearly always meaningful, but a negative result means nothing more than a lack of hits in a database that is well known to be incomplete.


To take it one step further, I don't necessarily trust studies linking genomic variants with disease significance. A subset derive correlations using oversimplified models:

http://www.ncbi.nlm.nih.gov/pubmed/23770567


The frustration directed towards the FDA in the 23andMe threads is not surprising, but short-sighted, IMHO. Sure, there are likely inefficiencies in the way the FDA operates, in a micro-sense, but in the macro-view, this sort of stuff needs to be regulated.

Many simple take-home tests that are arguably much more time-tested, reliable, and accurate than 23andMe's DNA services are FDA-regulated. If your basic take-home pregnancy test is FDA regulated, why should 23andMe be exempt? Or would you prefer a world where all of these tests were unregulated?

Not everyone does their research. Not everyone is intelligent enough to understand the implications of medical tests, drugs, and devices - regulation protects the vulnerable among us.

As an aside, I've worked in medical devices for most of my career. All other things remaining equal, engineering teams in these companies are no different, talent-wise and quality-wise, than most teams you'd see in other industries. Take the sloppiest engineering team you've worked with, now imagine them working on a clinical product with the potential to cause real harm to people (physical or psychological).

It is the regulation (FDA and others) that ensures that these teams "raise their quality game", so to speak. It is not perfect by any means, but I don't dare imagine the alternative. Yes, the regulation is a massive pain. I experience it first-hand. It slows things down, has massive associated costs and can even stifle innovation. The general trade-off, however, is worth it, IMHO.


If your basic take-home pregnancy test is FDA regulated, why should 23andMe be exempt? Or would you prefer a world where all of these tests were unregulated?

That's an outstanding comparison, one I wish I had thought of.


If I were to ever use 23andme, I'd use a fake name, a disposable mailing address, a fake email address, and never, ever discuss it with anyone.

Your genome doesn't change, and who knows where that data leaks to later? Who knows what healthcare providers will vacuum up such leaks?

Who knows what kind of discriminatory practices will be undertaken by service providers, insurers, or even employers in the future?

Haven't y'all ever watched Gattaca?!

Keep your private information private. Nobody else will do it for you.

EDIT: Oh, and USA PATRIOT too.


If I were to ever use 23andme, I'd use a fake name, a disposable mailing address, a fake email address, and never, ever discuss it with anyone.

That's not enough. Remember how netflix's "anonymized" data could be substantially de-anonymized by adding in IMDB's public data?

http://www.cs.utexas.edu/~shmat/netflix-faq.html

A similar thing can be done with DNA - if your relatives have given DNA with their names and there is another database somewhere else that lists relatives (ancestry.com or pretty much any of the hundreds of data brokers) then that relatives list cross-referenced with the similarities in the DNA between you and your relatives can be used to de-anonymize your DNA.

http://www.familytreedna.com/landing/family-finder.aspx

If you really need a DNA profile and you are paranoid, it might make sense to pollute any databases by submitting your DNA with someone else's identity information - just don't do a criss-cross where you swap with a friend and you both submit each other's DNA because that would be really easy to reverse programmatically.


>Who knows what kind of discriminatory practices will be undertaken by service providers, insurers, or even employers in the future?

FYI, This is illegal in the United States. It is prohibited by the Genetic Information Nondiscrimination Act of 2008.

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

You can thank Rep. Louise Slaughter for that one, she tried to get the bill passed for 12.5 years, and never gave up. She declared it "the greatest thing she has done in her time in Congress." She is the only scientist in Congress.


It's also illegal to discriminate due to age, gender, race, sexuality and disability, but it still happens all the time.


> She is the only scientist in Congress

Not true, fortunately.

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


Sorry for spreading misinformation. When I heard her speak some years ago, I could have sworn I heard the person who introduced her say she was the only scientist in congress. Perhaps they were wrong, perhaps I heard or remembered wrong.


Good luck proving that was the reason, though. How are you going to refute "he bombed the technical interview so we moved onto another candidate"?


If 23AM ever starts handing it out to anyone who asks, then it would become a concern. In which case you could make it illegal to disclose the information to anyone but the principal.


It probably is illegal to disclose it, that data should fall under HIPAA as protected health information. If the data in anonymized, then they could release it (as long as the person gave them permission). However, they couldn't release it with any identifying information attached.

At least, I assume 23andMe would fall under HIPAA regulations, but I'm not so sure. Does anyone know if 23andMe has an IRB?


No mention of HIPAA in their privacy statement. A perfunctory google search found mumblings online about them not being covered by HIPAA.

https://www.23andme.com/about/privacy/#Full


What about leaks? Insider threats? Acquisitions?


What about them? The GP was wondering about companies using the information to make hiring decisions. In order to do that, a company would need some kind of way of searching the data easily. If the only place it's available is on torrent sites and the like, then that would make it prohibitively difficult for most companies to use.

If someone takes all that data and turns it into a service, then that's something that can be taken down/regulated.


I was the GP - I don't want to work at "most companies" - in fact, most of the companies with which I wish to work have many people who can easily obtain data via bittorrent.


Were you born in the US after 1963? If so, your state of birth probably already screened you for genetic diseases at birth:

http://articles.latimes.com/2013/jul/19/opinion/la-oe-timmer...

Parental consent is not required – though with enough advance effort and written request, opting-out is possible.

Further, many states retain the "residual dried blood spots" for more than 6 months and perhaps indefinitely:

http://www.ncbi.nlm.nih.gov/pubmed/16737872

So a sample of your genetic material may already exist in a state government filing cabinet, somewhere. In California, the retained information and sample can be used "for medical intervention, counseling or specific research projects which the California Board of Health approves" and "anonymous research studies". See the section "Storage and Use of Dried Blood Spots" at:

http://www.babysfirsttest.org/newborn-screening/states/calif...

For newborns, the California program currently tests for 79 different disorders:

http://www.cdph.ca.gov/programs/nbs/Documents/NBS-DisordersD...

And the per-disease records are apparently kept for lookup-by-individual without retesting, because there's a routine by-email process for requesting long-ago sickle-cell results (back to 1990) about NCAA student athletes:

http://www.cdph.ca.gov/programs/nbs/Pages/NBSFAQTraitAthlete...

And that's not even considering all the health procedures (blood donations, tests, surgeries) or natural shedding (hairs, skin, saliva, excrement) routine in a normal life. You are a firehose of genetic samples, to any even slightly attentive observer, or even passive observers who take an interest some time later.

So: good luck keeping your genes from the state, if it really wants them.


> So: good luck keeping your genes from the state, if it really wants them

I guess you assumed that he was a born in a hospital because most are. Thankfully, most != all.

http://en.wikipedia.org/wiki/Home_birth#United_States


Good point, though home births are less than 1% of all US births. And, home births may still involve a later check-up with a doctor or hospital where screening happens. (Those who choose home birth for reasons other than genetic privacy might be happy to have the screening.)


You can potentially predict a male's surname from a DNA sample. The accuracy is roughly proportional to the frequency of the name.

http://www.sciencemag.org/content/339/6117/321.abstract


I think I can do that without DNA...


I suspect in the not to distant future, insurance companies will provide significant discounts on their premiums to customers who provide DNA samples.

Eventually, policies for people who don't provide DNA will cost as much or more than current Pre-existing Condition Insurance Plans (PCIPs).


I had those same fears, and I relayed them to my girlfriend in medical school. She told me within a decade this data will be collected at a standard checkup, so you are only delaying the inevitable.


considering that pre-existing conditions can no longer be considered for health-care service, there's less things to worry about.

Employers, on the other hand...


> considering that pre-existing conditions can no longer be considered for health-care service,

They can no longer be grounds for refusing coverage. They certainly are used in determining the price of your premiums.

The ACA is not the panacea that people sometimes seem to think it is. There are tons of ways the insurance company can use any data they have on you in their own best interest[0], making your life miserable in the process. Jacking up premiums is just the tip of the iceberg.

EDIT: As pointed out by aestra, there are other laws protecting use of particular types of information (eg. genetic information). My comment is simply a response to the quoted statement that "pre-existing conditions can no longer be considered for heath-care service [due to the ACA]", which is false.

[0] Which may or may no coincide with your best interest


The ACA applies a partial community rating that requires insurers to offer the same premium to all applicants of the same age and geographical location without regard to gender and most pre-existing conditions.


I've been casually looking for confirmation of that one way or the other for a few months now and my google-fu was not up to the task - and reading the ACA isn't really an option either, because of length and my own lack of domain knowledge.

Do you have a definitive citation spelling that out (and any possible loopholes)?


I saw it on HealthCare.gov when I registered for insurance through the "exchange." (Yes, it worked for me ... finally). I don't have a link for you, but I saw it. And any number of articles on the internet make the same statement. Only age, whether or not you use tobacco, and geographic area are factored into your premiums.


Why shouldn't pre-existing conditions be used to determine the price of your premiums? It directly impacts the amount of the insurance you're going to consume.

Doesn't seem any different that how a poor driving record impacts the price of your auto-insurance.


If you only look at the business-customer transaction, it's the same. But otherwise it's totally different.

If a bad driver can't get insurance, they are taken out of the pool of people who are driving. Everyone wins. There are fewer accidents - even the former driver is less of a danger to themselves. It makes the former driver's life a bit more difficult when they need to get around, but they have alternatives like transit. Other people see what happened to the bad driver, and modify their behavior accordingly.

People who have pre-existing health conditions are not immediately taken out of the pool of people who are healthing (i.e. euthanized). There is no alternative to living. If they don't get insurance - or it's harder for them to get insurance - they go on living, with increased misery, until the costs hit everybody with trips to the emergency room. It is very unclear whether that example will influence others to be more healthy - most diseases are effectively random, or strike with the kinds of probabilities that most humans are bad at integrating into their decisions. Even alcoholism has a component of genetic predisposition, and some people might even become addicted as children.

This is, of course, setting aside the moral argument, but this is is HN.


There's a moral argument to be made here. By the moral argument, pre-existing conditions, especially those not associated with voluntary behaviors like smoking, shouldn't affect insurance premiums because it unfairly penalizes a person for things beyond their control.

The point of insurance from the consumer's perspective is to mitigate the risks borne by any individual for black swan medical events, not to provide another reason for the already healthy to feel superior and contribute even less money to the collective insurance pool.

Unlike many health conditions, poor driving is something the driver can change, either through conscious choice or through additional driver training.


Another interesting way to look at it is that insurance is fundamentally based on future uncertainty.

Imagine if it somehow became possible to predict with perfect accuracy a person's future payouts under a given insurance policy. Bob goes to buy house insurance and they can predict with certainty that he'll eventually get $400,000 paid out (presumably because his house got destroyed somehow) while Steve is predicted to have nothing paid out.

If the insurance company has access to these predictions, they will naturally charge Bob about $400,000, plus a profit margin, while they'll charge Steve next to nothing. In this situation, insurance policies become nothing more than elaborate savings accounts.

On the other hand, if the clients have access to these predictions, Bob will buy the best policy he can find, while Steve will naturally not buy any policy. In this scenario, insurance companies all go out of business instantaneously because it becomes impossible to make any money, or even break even.

Yet both sides have huge incentives to try to approximate these scenarios as best they can. The better insurance companies can predict people's insurance usage, the more profitable they can be. The better clients can predict their own usage, the less they spend. But let both parties achieve their predictive goals and the whole thing falls apart utterly.

Medical science is driving relentlessly toward that goal, to the extent that many people were being shut out. The ACA tries to attack both sides of it, by preventing insurance companies from charging differing prices based on certain predictive information, and by preventing clients from refusing to purchase the product. In theory, this returns you to a flatter risk pool where all people contribute roughly equally and everybody sort of pretends they don't know that Bob's house is going to burn down.


So either we start practicing eugenics (bad), or we change insurance to serve as a collective safety net for societal benefit rather than simple risk mitigation for individual benefit.


What's different is that you can still lead a full, productive life if you're unable to afford car insurance, but you frequently can't if you have a pre-existing condition (which you may have been born with!) and are therefore unable to afford health insurance.

One can certainly argue that this shouldn't be the responsibility of the insurance companies, but that is still a major difference.


the car insurance is pretty dependent on where you live.


I can't figure out why this is relevant to my comment.


> Why shouldn't pre-existing conditions be used to determine the price of your premiums? It directly impacts the amount of the insurance you're going to consume.

I never said it shouldn't - but people seem to be under the impression that it doesn't. I commonly see statements to the effect of, "I don't care what the insurance companies know about me, since they have to provide me coverage." Maybe that's true if the only thing that matters to you is whether or not you have some form of insurance, at any cost, but that's not the case for most people.

As for whether or not it should be considered, that's a value judgement (and therefore inherently subjective). Do you believe that all people should pay the same amount for insurance that covers events beyond their control (ie, congenital diseases/defects[0])? You might argue that it's unfair to hide that information from the insurance companies or prevent them from acting on that (because information asymmetry in free markets is bad[1]), or you could argue that it's the responsibility of society to care for those who have conditions that require expensive treatment just to stay alive (because letting people die of preventable diseases is bad).

[I don't have an answer for that - I'm just clarifying the question, since you brought it up. :)]

[0] I use the example of congenital diseases because one does have influence over one's own chance of getting lung cancer (ie, if you don't smoke, the chances are far lower), but not for congenital diseases (your mother may have had some influence over that, but you yourself certainly didn't).

[1] Alternative argument: These costs just get spread to everyone who is insured. Assume the country consists of two people (Alice and Bob). If the true (expected) cost of insuring Alice and Bob are $50 and $100, it's unfair to Alice to force them both to "split the difference" and be insured at $75 each.


Because it's inhumane to jack the premiums so high that you basically refuse coverage. It's better to force everyone to buy coverage at the same price and just diffuse the risks/costs amongst a large population.


Using genetic information to determine price of premiums was made illegal by the Genetic Information Nondiscrimination Act of 2008 http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimi...


> considering that pre-existing conditions can no longer be considered for health-care service, there's less things to worry about.

They can't be considered now. There's nothing to say that a few years down the line that won't change.


> considering that pre-existing conditions can no longer be considered for health-care service

The US is not the whole world.


23andme is a consumer genetic testing company. The testing is not meant to be clinically applied. I work for a company that is similar to 23andme, different in the sense that the test can be clinically applied; the catch is that everything you report must be very robustly researched and you must comply with more regulation (research, lab, medical, security, etc.) which drives up the cost but gives you much more actionable and medically relevant information.

I think there are benefits to both approaches of genetic testing; 23andme has a lot of data it collects and can do interesting statistical studies/reporting that other more research-oriented companies cannot. However, like I said before, you can't view a test like that as medically actionable. In the end though, the more testing there is (as long as the messaging is clear and consumers do their homework), the better oFf the world will be.


Thank goodness there are thousands of people being paid to prevent me from spitting in a tube and getting noisy data about my own body! I should only be able to get data about my body after running a gauntlet of specialists with millions of dollars in total education, for my protection, of course.


I'd never want to get my DNA tested by a service like this. It may be cool, but there's too many things at play here.

    - privacy
    - security of data
    - wrongful use of data
    - spread of misinformation
    - mind fucking that ensues after reading your results
    - probably a lot more
The only benefit is for those who are so curious about what genes they carry, what mutations they have, and who they may or may not be related to. Really, why risk having your mind potentially fucked by knowing something about yourself that you're not ready to handle yet?

Sorry if I seem overly critical about a service like this, but it just doesn't seem worth it to me.


I signed up for 23andme.com a few months ago, mainly because I'm adopted and I don't know anything about my family history, so I thought it would be neat to check out. The one and only thing that bothers me so far is their definition of privacy. Here's what I mean:

One of the features they provide is ancestry help. They compare your DNA with all other users' DNA and then give you a list of potential relatives. They say "hey, you guys share .6% of the same DNA, you might be 3rd to 5th cousins."

That's cool, right? Especially for someone who is adopted.

The problem is that it takes 2 weeks longer to do the ancestry stuff than it does to do the medical stuff. The medical results showed up in my account about 4 weeks after I sent off my spit-filled test tube. The ancestry results showed up a full month later. In the meantime, between medical results and ancestry results, I'm getting "friend requests" from other users. There are no messages attached to these users, but I presume they believe, somehow, that they are related to me.

How can this be? I hadn't yet received my own ancestry results.

I emailed 23andme.com support, and here's what they said:

> Thank you for contacting 23andMe.

> If you've been genotyped through our service, you can share your genome with other 23andMe users and compare yourself with them using our various features.

>This is of special interest to members who are interested in their family's data.

> Due to the way our computation process works, some of your relatives can actually see you appear in their list of DNA Relatives before all your results are uploaded.

Let me repeat that last part:

> Due to the way our computation process works, some of your relatives can actually see you appear in their list of DNA Relatives before all your results are uploaded.

So get this: my name and some level of my DNA results are shown to complete strangers, and not only that, but they are shown before I even get the information.

That bothers me. That bothers me a lot. I haven't yet decided what to do about it, but believe me, I've spent a great deal of time considering this since it happened.


So by default your name and DNA are not visible to anyone. You'd have to make your profile public in order for other people to see any information about you. All it shows in the relative finder is that there is a match. The person just follows the "contact" link and sends you a message. They don't really expire, so you can just sit on them until you feel like responding/granting access-- at which point they can then see your name. At that point they can't see your DNA either-- you have to go through another process to grant them access to your DNA. All in all it's a pretty good system.


Wow, that's insane. You make a great point about it being useful for persons who are adopted. I agree that it's useful to know more about yourself that way. However, the manner in which your data is handled BEFORE you even get it is FUBAR to me. Sorry you have to go through this, and I'm sure it'd bother me a lot too if I were in your shoes.


Also, Sense About Science had a great piece on the (lack of) accuracy of this kind of ancestry testing. http://www.senseaboutscience.org/data/files/resources/119/Se...


That's really interesting, I didn't realize they did that so blatently. It would definitely bother me. Let us know if you decide to do something about it!


I don't really understand your objection - what is it about a cousin, say, knowing they're your cousin a week or so before you know that troubles you so much?

Please note I'm not saying I disagree, I'm simply asking if you can elucidate the problem further.

The same sort of thing happens to non-adoptees all the time - one's cousins who do family history research may know decades before you that they are your [near] relative.

Aside, it's also interesting WRT privacy of sperm/egg donors. I recently commented in a thread (on Reddit I think) that an egg donor should be aware that it may be quite likely, even if not presently possible, for the child to trace them [the biological mother in that instance] in the future either due to tech or legal changes. This was flatly dismissed as an impossibility; little was I to know it might already be quite possible [in the sense of being attainable by the general public].


There are three major problems with it:

1) I don't even have access to my own information at this point. It's like if the doctor were to post a picture of your newborn baby on FB without your permission before you got to hold it.

2) The accuracy of 23andme's ancestry information is suspect. They think we might be related based on vague data. And again, the other people have this vague data before I do.

3) Finally, there is medical information attached to my account. For instance, maybe I have a normal risk of prostate cancer. Now 23andme decides that I'm related to Joe (true or not), and Joe has a super high risk of prostate cancer. What inferences can be drawn about that? What if this kind of data is shared with a third party -- again, without my knowledge -- and that third party can use that against me somehow? (Insurance, whatever.) I'm not okay with that.

In the end, it's the opaqueness of this process. If 23andme wants to say "Hey, we're not 100% done with your ancestry results, but we found a few people we think might be matches" at the same time they say the same thing to the other people, then that would be okay. But at the time, I was getting requests from alleged relatives that I had no way of knowing they were alleged relatives until 23andme gives me my results.

In other words, these other people -- strangers! -- knew something about me that I hadn't yet found out myself, when it should have been made available to me at the same time.


So get this: my name and some level of my DNA results are shown to complete strangers, and not only that, but they are shown before I even get the information.

This isn't true at all. Nobody sees your name unless you specifically set the privacy setting to that which I can't imagine anyone doing.

Nobody has ever seen my name on 23andme and I see maybe 1 out of 1,000 people's names when they say that they've found a possible relative. Those 1 out of 1,000 people have set their privacy settings to allow that for some weird reason.


Isn't the ancestry matching opt-in? At the very minimum, I'm pretty sure you can opt out when you give your sample.

In that case, if you do have a match, obviously both people will have to be notified of the other's identity. It sounds like you want to see whether you have relatives before the relatives get to see it. How is that fair?

Also are you sure these other people are getting your identity? How do you know it's not masking your identity to these only people which only gets unmasked if you accept/reply to the request?


I could opt out, but I really do want to know my ancestry information. My objection is them sharing my information before I even get a chance to look at it. It's like if you had a baby, but the nurse and doctor published your baby's photo on Facebook before handing you your baby. Why should anyone get to see my information before I do? And then they get to contact me before I even know why they're contacting me? That's bizarre to me.

At this point, I have my information and now that I have it, I'm okay with sharing it, because it's my information to do what I wish. But they were sharing it before they shared it with me, and that's not okay, imo.


But if the information is "here are other people you might be related to", it's not your information; it's both people's. I just don't understand how that can be revealed to you first without being unfair to the person on the other side of the coin, or why it's such a big deal if the reveal doesn't happen at exactly the same time.


Sure. The problem is that I'm getting _requests_ from people I don't know based on _information_ I don't have, and I don't like that _they_ have information about myself that I don't have. And since _they_ have the information, then there's absolutely no reason why _I_ can't have the same information at the same time.


...by knowing something about yourself that you're not ready to handle yet?

I surmise from observation that this is a common human sentiment, but I don't understand it. It affects more than just medical information. What aspect of human nature drives many of us to avoid the truth?

One cannot solve a problem of which one is unaware, whether it's climate change or a potentially harmful recessive gene.


It's not about avoiding the truth, it's about looking for the truth in a specified area but finding something that's not really a truth but appears as such. I think it's important to weigh the pros and cons of something like this. You're likely to gain information that would likely help you improve your quality of life and make informed decisions for possible next steps, but what happens when this information is available to others you don't want to see yet [1]?

It's not just solving a problem of which one is unaware, but it's the possibility of not being able to solve this problem or prevent its occurrence. [Climate change on the other hand is actionable.]

What about the fact that now there's a giant database that's probably not as anonymized as we'd like it to be, which has the potential to be accessed by many government/national/security agencies and hackers that can use the information against us?

[1]https://news.ycombinator.com/item?id=6796539


With regard to the possibility of error, we (humans) just need to learn to set our expectations accordingly. If a given source of information has a small possibility of error, a possibility of negative results due to negative information, and the potential to avert the negative results by acquiring the information, we need to tell ourselves that we will not be affected by whatever negative information we gain. We need to assume for emotional purposes that it is likely erroneous, until verified by other means.

With regard to privacy concerns, I agree, and I hope that existing or future regulations like HIPAA protect this information enough that the knowledge gained outweighs the risk of privacy lost.


Yes you have just lost the "pre-existing conditions" battle with your insurer if you do this.


Well you dont have to fight that battle anymore in the US due to ACA.


Really? How's website telling you about some condition is on par with board certified doctor's diagnosis?


Re: lists, you have two options. Either add another linebreak in between each option (they'll be formatted effectively as paragraphs) OR indent the block by four spaces and format it however you want (it will become a code block).


Thanks!


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