
Employees who decline genetic testing could face penalties under proposed bill - happy-go-lucky
http://www.mercurynews.com/2017/03/11/employees-who-decline-genetic-testing-could-face-penalties-under-proposed-bill/
======
no1youknowz
Already posted:

[https://news.ycombinator.com/item?id=13848599](https://news.ycombinator.com/item?id=13848599)

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klenwell
I interviewed a couple years ago with a startup that was a commercial and
research leader in personalized medicine with a portfolio of patent-protected
genetic tests. After a laughably bad interview, I looked a little deeper into
their business model.

A little Googling revealed the real business model was to convince doctors and
medical groups to order these tests and pass the costs along to insurance
companies and Medicare. These tests are pretty useless in most cases, probably
not a lot different from 23andMe. Your grandmother goes into see her doctor
with a cough. Her doctor now throws in a couple genetic tests to go along with
the normal blood tests and obligatory cat-scan. And the cost of American
medicine continues to rise with the same lousy results.

~~~
lohengramm
Are 23andMe tests useless? Don't get me wrong, I am just curious about it.

~~~
ChemicalWarfare
Depends on the definition of "useless" :)

They used to be better until FDA cracked down and prohibited them from
providing a detailed analysis of the DNA results where they would do a very
decent breakdown of what kind of decease you might be predisposed to based on
the results etc.

From what I understand they still do this in Canada though, also there are
online services that can take your results and provide some sort of an
extended analysis, never dealt with them though.

~~~
neuronexmachina
There's also several 3rd-party tools, like promethease, that can take the raw
data from 23andme and produce much of the old detailed analysis:
[http://www.23andyou.com/3rdparty](http://www.23andyou.com/3rdparty)

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guftagu
Isn't this exactly the premise of the movie Gattaca? Great movie, BTW.

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mikeash
IMO Gattaca makes a great case _for_ genetic testing. An idiot with a major
heart condition bluffs his way onto a space mission where he's likely to die
and endanger the rest of the crew. If the testing had been a bit more thorough
(say, if the doctor in charge of testing had done his job) then the mission
wouldn't have been endangered.

It's strange to see everyone hold up this movie as an argument against this
sort of testing.

~~~
DrJokepu
It's been a long while since I saw that movie, but I'm fairly certain that it
was way more complicated than your synopsis.

~~~
mikeash
There's a ton of other stuff in the movie that attempts to make the case
against testing, but IMO it's all overshadowed by the main plot wherein a
failure of testing likely results in a major problem for an important mission.

~~~
rosser
You'll have to remind of of the part in the movie where dude's presence on the
mission is a problem for the mission.

Or, wait, is that just your conjecture? Sorry. My bad.

~~~
mikeash
He was the navigator. That seems kind of important. If it wasn't, why would
they bother to bring him along?

~~~
rosser
You either missed or evaded my point, simply to re-state your own. (Also: nice
shadow-edit.)

~~~
mikeash
I don't see where I'm evading or missing your point. Perhaps you could
explain? And I didn't make any shadow edits. You sound rather paranoid.

~~~
maxerickson
Did he die during the mission? Did he really have a heart condition?

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mikeash
He really had a heart condition which put him at high risk of death during the
mission. That is stated in the movie. We don't know if he died during the
mission, but I didn't say that, merely that it was likely.

~~~
maxerickson
I'm pretty sure that in the movie they say that the genetic tests point to a
high probability of a heart condition.

It's left ambiguous as to whether he actually has a deadly heart condition.

There's the scene with the treadmill, but that can just be to show that he is
normal.

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Pxtl
Meanwhile in Canada, the House voted to ban genetic discrimination, over the
objections of the Cabinet (who believe this should be a provincial issue and
not a federal one).

[http://www.cbc.ca/beta/news/politics/genetic-testing-bill-
vo...](http://www.cbc.ca/beta/news/politics/genetic-testing-bill-vote-
wednesday-1.4015863)

~~~
dorfsmay
Isn't the ability to live on native land based on genetic discrimination?

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Pxtl
No. It's based on ancestry. While those are obviously tightly related, the
distinction is important.

There are no genes that are identified as "First Nations genes" for this
purpose.

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dorfsmay
Is one more acceptable than the other?

I heard of stories where two kids are playing on a reserve, they go to the
same school, share the same culture, both know the same amount of words from
their ancestral language etc...

But when they turn 18 the one which is 40% native will have to leave the
reserve, will suffer from racism inherent to "being native", and will have no
special advantage while the other who is 60% native will be considered native
and able to stay on the reserve.

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kbenson
In some places it's _much_ more confusing than that, and highly political[1].

1: [https://www.thisamericanlife.org/radio-
archives/episode/491/...](https://www.thisamericanlife.org/radio-
archives/episode/491/transcript)

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gumby
This is based on theory of 'wellness': the insurance company / employer should
take a holistic approach to health. Which seems like an obviously good idea,
but research has shown that in practice it doesn't save money or lives.

So they are doubling down on a disproven theory to invade people's privacy.
Hat trick to the GOP House if they can pull this nonsense off.

~~~
astrange
> Which seems like an obviously good idea, but research has shown that in
> practice it doesn't save money or lives.

Why don't they?

~~~
ghaff
A number of reasons.

\-- Most healthcare monies are spent on the sickest individuals and they're
least likely to participate in a wellness program. And the most motivated
participants in lifestyle change sort of program would probably have been the
most motivated to make changes outside of a program.

\-- Many chronic illnesses and other expensive medical conditions/procedures
are not prevented by wellness programs, getting an annual physical, etc.

\-- A lot of programs are pretty superficial. (Discounted gym memberships and
the like.)

~~~
curun1r
The wellness programs were never about changing behavior or making people
healthier. They're about satisfying actuaries to reduce the cost of insuring
more healthy individuals. Determining how much someone's health care premium
should be depends on assigning them to a risk pool. The more data you have on
that person, the more nuanced you can make that assignment. These wellness
programs gather that data and appropriately discount the health insurance
premiums of lower-risk employees. That they may change a few people's
unhealthy behavior would just be a bonus.

I've never seen a problem with that. I do believe that everyone should have
the right to health care, but I don't think that everyone should have the
right to health care at the same price. If people are actively making choices
that make them, statistically speaking, more costly to insure, why shouldn't
they have to pay more as a result?

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wodencafe
Congress is going backwards! How could they even consider this bill?

It's legalized genetic discrimination, and no protections on how the data can
be used (or who it can be sold to).

~~~
deathhand
To be devil's advocate... Why not just make the data free and open to all? It
is for the benefit for humanity. You and I are in this world together and we
should help each other as much as possible.

~~~
cylinder
When did I agree to be in this world with everyone else? I am free to go off
and live my own private life without being part​ of this "global community" if
I choose.

~~~
dsr_
That's actually very difficult, possibly impossible. Virtually every square
inch of land has been claimed by someone else. Much of the ocean is open to
you, but it's very difficult to bootstrap without substantial resources from
land-based civilizations.

~~~
thotpoizn
I dunno, there are still places in the US where you can buy decent land,
outside of any city limits, for under $1,000 an acre. And there are absolutely
scads of places you can buy NICE parcels (including tree lines, water, etc.)
for around $2K / acre or less.

This just doesn't seem too completely unattainable to me. The average able-
bodied person, properly motivated and living frugally, should be able to
secure a few acres over one or two summers, easily.

... Unless you're talking about true "Swiss Family Robinson" style
independence from any and all societal benefit or influence. Because then,
yeah, that is pretty much not possible any more. Finding someplace a little
out of the way, and "living off the land" in relative peace, however - that
remains quite attainable.

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Keverw
Companies already want to drug test employees... Which I feel shows you don't
trust them. Which some companies make you stand in front of someone watching
you pee. When there's less invasive methods such as a spit or hair
sample(Maybe they cost more to use or somthing?). Now they want to do genetic
testing?

Well my aunt's work does somthing like this, if you get your blood checked
once a year you get a discount, but I don't know if the company gets a copy of
the results. I would think that would violate HIPPA, but I know if you switch
doctors you can sign a release so your new doctor gets the information. So I
assume it's all done with your permission(Signing a release with the doctor).

America is the only country that ties health insurance to employment also.

Edit: Looks like some positions only urine tests are allowed by federal law
but looks like just DOT jobs. So If you have a desk job or working retail,
looks like the companies are free to pick any much any method.
[https://www.quora.com/How-likely-is-a-hair-drug-test-for-
pre...](https://www.quora.com/How-likely-is-a-hair-drug-test-for-pre-
employment)

~~~
ChemicalWarfare
>> Companies already want to drug test employees... Which I feel shows you
don't trust them.

This is more of a liability issue then anything else. If you do something
while high the company has some protection from getting the "he was high while
on the clock hence you responsible" book thrown at them.

>>America is the only country that ties health insurance to employment also.

It's not. Also, you're free to decline the coverage through your employer and
buy your own (or not buy any). Which used to be a viable option until
Obamacare kicked in - now you either buy what's called a "short term"
insurance OR buy the same coverage and pay 2-3 times more for it. Why would
you do that you might ask? Because short-term policies impose tax penalties
and can only last up to 6 months so you have to constantly change providers
which is an ordeal...

~~~
kbenson
From my experience it's not 2-3 times more, depending on your specific
conditions and possibly region. For me, a male over 35 in not very great
shape, it's maybe a 20-30% difference IIRC.

~~~
ChemicalWarfare
From what I've seen it was $100 vs $350 type deal.

~~~
kbenson
My work provided plan is about $350 for a fairly cheap Kaiser plan.

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ChemicalWarfare
Not seeing anything about any penalties in the bill.

These wellness programs are voluntary with the premise of the employee getting
some sort of benefits for participating. So the only way I can think of where
this can be presented as a "penalty" is if a company establishes a wellness
program and the only way to get the benefits is to comply with the rules of
the said program, of which dna testing can legally become a part of if this
passes.

~~~
brohoolio
The companies can charge you higher premiums for opting out. I think 30%
higher.

~~~
ChemicalWarfare
You don't have to participate in their coverage though, so even if that was
the case (which I personally never encountered this - the programs I've seen
were centered around gym membership discounts, free cholesterol level testing,
some small monetary compensation - like $100 - $300/yr type deal for partaking
in some kind of a "weight loss challenge" etc) - the whole thing is not
mandatory.

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ta12mar17
If this had been required back when I got my first job, I would've learned
that my wife and I are carriers of a rare genetic disorder, and it would've
saved the sadness and pain of my wife having delivering stillborn twins. My
wife is still dealing with medical issues years later because of this. The
pain was indescribable.

Furthermore, as an employer myself, I can't for the life of me understand or
comprehend how one would discriminate against someone based on what genes they
have. Or how anyone would. At the point an employee gets tested, you've
already hired them. What are you going to do? Block them from leading a
project since they test positive for XYZ Type A? Or getting a promotion
because they're carriers of ALS?

~~~
lisper
I'm very sorry for your loss.

> I can't for the life of me understand or comprehend how one would
> discriminate against someone based on what genes they have.

Did you really mean to say "how" or did you mean "why"? Because the "why" is
that if you have investors (at least in the U.S.) then you have a fiduciary
duty to them to maximize their return by all legal means at your disposal. You
do not have a fiduciary duty to your employees. So if you can increase profits
by discriminating against employees who are more likely to be sick then you
have no choice but to either do it or break your fiduciary duty to your
investors. You could actually be sued if you don't.

> What are you going to do? Block them from leading a project since they test
> positive for XYZ Type A? Or getting a promotion because they're carriers of
> ALS?

Yes. Exactly. And then hope they quit. Or, if you're in an at-will state, you
could just fire them.

Please note that I am not endorsing this system. I think it sucks. But that's
the way things currently are in the U.S.

~~~
dredmorbius
That fiduciary duty myth you've just restated is just that, a myth. Created
from whole cloth (like many others) by Milton Friedman.

[http://evonomics.com/the-myth-of-maximizing-shareholder-
valu...](http://evonomics.com/the-myth-of-maximizing-shareholder-value/)

~~~
lisper
All social constructs are myths, including the very idea of a corporation
itself. When enough people believe the myth it becomes self-actualizing. The
law itself is a self-actualizing myth, having power only because enough people
believe that it has power. It is that shared belief that causes the law to
have actual power in the real world.

It's the same with corporations and their duties. Enough people believe the
"myth" that shareholders own corporations and that corporations hence have a
fiduciary duty to their shareholders that this "myth" becomes self-actualizing
in exactly the same way that the law becomes self-actualizing. The law itself
even has a mechanism for incorporating such self-actualizing myths,
notwithstanding that they are not formally codified into the law. That is
called "common law". Common law is a meta-myth. Nowhere will you find the idea
of common law formally incorporated into the law. And yet anyone who
questioned the principle of common law (at least in the U.S.) would rightfully
be considered out of touch with reality. Likewise for the fiduciary duty of
corporations to their shareholders.

~~~
dredmorbius
You're verging on, if not wholly embracing, a complete dispensing of the very
concept of truth.

The fact remains that the legal obligation you claim exists does not. Not in
statute. Not in jurisprudence. Not in common law.

Which is incorporated into law through jurisprudence, e.g., Houston & T.C. Ry.
Co. v East, 81 S.W. 279 (Texas 1904), or Pierson v. Post, as examples.

Cheers.

~~~
lisper
> The fact remains that the legal obligation you claim exists does not. Not in
> statute. Not in jurisprudence. Not in common law.

Wrong. The matter was definitively decided in 1916:

[https://en.wikipedia.org/wiki/Dodge_v._Ford_Motor_Co](https://en.wikipedia.org/wiki/Dodge_v._Ford_Motor_Co).

Note that Milton Friedman was four years old at the time, so this data point
also falsifies your claim that Friedman invented fiduciary duty to
shareholders out of whole cloth.

You really should do your homework before you accuse someone of "dispensing of
the very concept of truth."

~~~
dredmorbius
Reading your own reference:

 _Dodge is often misread or mistaught as setting a legal rule of shareholder
wealth maximization. This was not and is not the law. Shareholder wealth
maximization is a standard of conduct for officers and directors, not a legal
mandate._

~~~
lisper
You left out an important bit of context:

"However, ONE VIEW is that this interpretation has not represented the law in
most states for some time." [Emphasis added.]

IMHO that view is wrong. The fact of the matter is that if, as an officer of
the company, you do not act in the best interests of the shareholders you can
be sued in all 50 states, and if your conduct was sufficiently egregious you
will lose. The business judgement rules gives you a lot of wiggle room, but it
does not change the basic underlying principle. Whether you call this a "legal
mandate" or a "standard of conduct" is just quibbling over terminology.

In any case, your claim that fiduciary duty to shareholders is "a myth ...
[c]reated from whole cloth (like many others) by Milton Friedman" is plainly
flat-out false.

~~~
dredmorbius
I concede the point. It is a myth to which Friedman cannot even claim
originality.

Stout has more to add:
[https://works.bepress.com/lynn_stout/3/](https://works.bepress.com/lynn_stout/3/)

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aplomb
People with poor genetic dispositions are significant cost to our socialized
healthcare systems - this is the end game and always will be when costs are
shared or mostly paid by someone that is not you.

In the benefactor's view there are a few actors crashing their cars everyday
and others who have never had a ticket - currently they're all paying the
same.

~~~
jfoutz
Yeah, what the hell has Stephen hawking ever done for us? Socialized medicine
supports the guy, and we get nothing in return.

~~~
aplomb
I wasn't questioning right or wrong of socialized medicine, just calling out
what ultimately happens and the viewpoint of those who truly control/manage
the system

------
pmorici
co-founder of genetic testing company floated for position in administration
and now provisions start showing up in bills that would enlarge the market for
genetic testing. Reminds me of Solyndra.

------
fixxer
Interesting source...

