Amy tortures Illumina/23andMe chiseled guy

[amy c.]

[I split this into a new topic. -Ed.]


Well, that was interesting. On the plane to London I was sitting next to Todd Dickinson, who's the director of global segment management (marketing, that is) for Illumina; 23andme uses their chips. He's very bright, a chemist (analytical, if I remember right), terribly chiseled and tall, a young-looking fortyish, maybe. He was quite sanguine about the ability of GINA to stop insurance companies from using genetic info as a basis for denying coverage or for rate-setting. However, he a) hadn't read the bill; b) hadn't considered that since insurance companies are essentially bettors, they don't need individual people's genetic profiles if they've got masses of aggregated fine info. All they need to know is that you've got Condition X, and if the ginormous database (or studies of the database) shows that people with Condition X are also more likely than the general population to have Conditions A, B, and C, and you can find yourself paying more for coverage for those three conditions, or ridered out altogether.

Then I made the mistake of asking what people in his industry thought of GATTACA, and I doubt I've seen a finer example of "dismayed". He said he preferred to focus on positives, but that people in the business did seem fascinated by the movie. He also said the thing about science being merely a tool, etc.

Well, he says he's going to read GINA now, anyway. I've now read what look to be the relevant parts of it myself, and the focus is entirely on individual info. It looks to me as though employers may purchase medical database licenses. Nor do I see anything prohibiting insurers from buying database licenses. (Why involve employers? A few reasons -- in the US, employers are the gatekeepers to most group insurance policies; if they mayn't ask applicants and employees for their own genetic info, their insurers can't get to it either. Also, knowing you're likely to be expensive to insure can also be a factor in hiring. I suppose there could also be dscrimination if the employer has funny ideas about various diseases.) I haven't yet sorted out what the restrictions are for various types of insurers -- in the US there's a funny gray area between individual policies, which you buy if you're totally out of luck, and employer group insurance. There are also small-group policies sold by associations and some other variants.

[Dr Mike]

Wow. I don't know if the UK, or the EU, has anything like this. Does anyone else?

[hedge]

I have read that there is a moratorium on UK insurers having access to patient genetic data but that this will expire in 2011 and as yet there is nothing to replace it. But I may not be up on the latest.

[challenge]

Thanks for the link Amy. I'll read up on it....soon.

The linkage between Condition A and condition B is what bothers me in general. There might be a few conditions that always link together [not that I have any examples on my mind right now] but over all I don't think that would be always true*. And more importantly, what ratio is going to determine when A and B and C are grouped? When more than 80 % share the condition? Or maybe 25%? After all, it might be more likely that you get Condition B and C together with A, but not condition A with B and C (statistically they can differ).

Not to mention that I am really annoyed with the whole "being clumped together with 'others' who have linkage".

I was quite surprised the other week when a friend of mine was looking to get insurance through their [private] one man buisniss. I should've understood that there were several categories that makes your premium differ. I guess what surprised me was not the "tobacco user/Non tobacco user" but rather "normal/over weight" since I didn't see if the BMI requirement was 30< or 25< of females.... then I realised that I might be in trouble if I am getting my own insurance unless I really loose those lbs depending on which BMI scale I need to get under**

*I might be way off wrong here. Maybe there are many conditions that are linked?

**I am luckily under the 30 limit. it's the 24/25 thing that is a bit off at the moment .... :

[amy c.]

Yeah, they don't like 30. My guess is that at 25 or so they begin to see more correlation with expensive chronic conditions like diabetes and back/joint problems.

Your friend's only got the prelim. quote info, I gather. Usually when you buy individual insurance they look for any excuse to put you in a non-preferred pool and hike the premium -- they'll often send someone out to weigh you, collect blood, and have you fill out other forms including psych history. Their underwriters will assemble your medical records, too, and have a look through. They do the same for non-group life and disability insurance. Buying individual health insurance is one of the poorest deals going here, apart from paying the retail doctor/hospital rates.

Dr. Mike, I'm not sure that there would be such political force behind a GINA-type act elsewhere. Insurance and medical costs drive the legislation here, but I don't know of any other first-world country with such a loony healthcare scheme. If it can be called a scheme. I suspect that several of the crazymakers will go away under Obama, including the FICO hold. FICO's the credit score, which is generated by the Fair, Isaacson Co. under some proprietary formula, and increasingly controls not just your ability to borrow but your ability to get a job or rent an apartment. Some bizarre distortions in behavior have come out of it -- you see people fighting to hold onto credit cards they've never used, and high credit card lines they don't need, because two of the ingredients in FICO are length of credit relationships and debt-to-available-credit ratios. I'd expect to see some simplification of tax-deductibility for health-insurance and med/dental costs, too.

challenge, you'd have to talk to insurance-co statisticians or scholars for the "what trips a health-insurance connection" question, but my guess is that it could slide pretty easily. For instance, if there's a weak correlation between conditions A and C, and you've got A, you might find your rates boosted a little; if there's a stronger correlation, you might find C ridered out altogether, or an extra premium charged for covering C -- or if the law insists they cover C at no extra charge to policyholders, they might turn you down altogether because you've got A.

[challenge]

Yeah, they don't like 30. My guess is that at 25 or so they begin to see more correlation with expensive chronic conditions like diabetes and back/joint problems..

So I thought. Let's just hope that I never need to apply for a "individual" health insurance. It looks bleak for a person like me....

...they'll often send someone out to weigh you, collect blood, and have you fill out other forms including psych history. Their underwriters will assemble your medical records, too, and have a look through.

..and I am scared of going to the doctor as is...

... or if the law insists they cover C at no extra charge to policyholders, they might turn you down altogether because you've got A.

That is already happening back home actually, for some rare diseases that give correlation to others and then you can never get life insurance. Since we don't need "private health insurance" that is not a problem [at the moment] but I can surely see that coming. It's like the idea that you need to be enrolled at an early age and never ever miss a payment - so you can stay within the program. Although, back home they reassess you at 18 (minor turns adult) for eligability for keeping the life insurance.... so if you have had something severe as a child you might be dropped.... it's all about the money me thinks

[frogfactory]

The NHS is really a wonderful thing, no matter how much people bitch about it. I've only been here three months and my insurer has already managed to piss me off. I can't imagine what it's like to face dealing with this kind of system for one's whole lifespan.

[Mad Dan Eccles]

Fuck yeah.

The Australian health system is brilliant—as long as you don't ever get sick...

[amy c.]

The NHS is really a wonderful thing, no matter how much people bitch about it. I've only been here three months and my insurer has already managed to piss me off. I can't imagine what it's like to face dealing with this kind of system for one's whole lifespan.

It does age a body. Or make you kind of fangy. I remember the contortions I went through in poorer days, trying to make sure I had coverage for asthma/allergies. One co's refusal to pay had me calling a Senator's office for help, finally had to get the Dept of Labor involved over something like a $400 charge. Then I found an HMO that would take me, but their building was filled with desperate/sullen docs, and there was no prescription coverage. Had to resort to making the sample-closet rounds with a paper bag until I discovered I could fill out paperwork declaring myself indigent so pharmas would mail me drugs as a gift. Or political safety valve. The HMO went bust a few years later and I got a phone call from whatever scavenging firm cleaned up their accounts; they wanted $1K for something I had nailed down as an approved procedure two years before. I yelled at them and they went away, but who knows how many of their victims paid up.

It did occur to me while in London that rent + NHS charges there might about equal my mortgage + medical costs here.

The worst of it is the sudden recognition that your exposure for a particular condition is limitless. When my ex landed on the psych ward, we still had two sets of insurance rules for "mental" and "physical" illnesses, with very limited coverage for mental. The psych ward cost, iirc, $400/day for outpatients. If he'd ended up in the bin much longer, it could've wiped us both out; as his wife I was responsible for his medical debts. I ran around and found catastrophic coverage that would've limited our exposure to about $20K per year, but we were eligible only because of a group association I had. Lucky for us the state legislature -- and yes, this all varies by state -- forced the insurance co's to stick to one set of rules the following year.

Anyway. This is why I won't sign my kid up for the state children's insurance, which would cost about $15/mo -- I can't get anyone at the insurance co to divulge what the actual coverages are unless I sign her up, and can't find anyone in the state admin who knows. I don't want to save $150/mo on health insurance and then find out that some expensive condition she's developed isn't actually covered.

[challenge]

.. which would cost about $15/mo -- I can't get anyone at the insurance co to divulge what the actual coverages are unless I sign her up, and can't find anyone in the state admin who knows. I don't want to save $150/mo on health insurance and then find out that some expensive condition she's developed isn't actually covered.

that just sounds insane. Surely they must need to tell you WHAT you are paying for BEFORE you start paying. *shakes head* then again, I guess that is how they can make a few bucks?!

I surely didn't know that all our life insurances were renegotiated when I turned 18... and of course, I missed the part that if I don't have an address in Sweden where I live, I am not eligible to keep my life insurance either. Guess who lost all insurances [and years of payment] when she moved to US for her post doc? Fun fun fun times in this globalisation era..... pfff....

[tideliar]

...My guess is that...they begin to see more correlation with expensive cthonic conditions like tentacles-of-the-forehead, eternal damnation and an irrational urge to eat the universe.

[amy c.]

...My guess is that...they begin to see more correlation with expensive cthonic conditions like tentacles-of-the-forehead, eternal damnation and an irrational urge to eat the universe.

Oh, well, they rider that out completely.

[amy c.]

.. which would cost about $15/mo -- I can't get anyone at the insurance co to divulge what the actual coverages are unless I sign her up, and can't find anyone in the state admin who knows. I don't want to save $150/mo on health insurance and then find out that some expensive condition she's developed isn't actually covered.

that just sounds insane. Surely they must need to tell you WHAT you are paying for BEFORE you start paying. *shakes head* then again, I guess that is how they can make a few bucks?!

I think it's more that a) they assume poor people should be grateful for anything; b) social-service workers are not used to thinking of long-term personal-finance issues like liability; c) the whole thing's probably run on a shoestring. It's the last that makes me most nervous -- if you show up with some unusual condition, there may not be any established way of handling it. That could lead to months or years of conflicting reports on whether or not you're covered, based on what Bob and his boss Mary think today, and in the meantime you're supposed to be making high-stakes treatment and financial decisions. And I wouldn't count on either Bob or Mary's being all that fantastically bright.

So, you know. This is what you deal with before you get to the huge DNA datases. The more I think about it, the more I wonder if employability wasn't really the major factor driving GINA.

[Beatrice]

It's all ludicrous as far as I'm concerned. Think of all the potential conditions we might have from genetic defects that you CAN'T test for. As I understand it there are only reliable tests for the really obvious ones that you'd know you have (or run in the family) anyway such as sickle-cell anaemia and cystic fibrosis. I see this sort of thing becoming a problem in ten years' time, but surely now there isn't much we can learn from people's DNA, prognosis wise.

[tideliar]

But that won't stop employers, insurers et al. jumping all over it now.

The rapid growth of this new industry is testmony to the fact that people think it will tell them something...