Employees who decline genetic testing could face penalties under proposed bill

http://www.mercurynews.com/2017/03/11/employees-who-decline-genetic-testing-could-face-penalties-under-proposed-bill/

by happy-go-lucky • 9 years ago

165 115 9 years ago

mercurynews.com

wodencafe• 9 years ago

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).

krapp• 9 years ago

How could they even consider this bill?

This is the sort of thing the Republicans plan on replacing the ACA with.

ghostDancer• 9 years ago

Land of the free. It's the free market and all that bullshit that USA like to get proud of. Now people is going to be a nice resource and a cheap and easily replaceable one too.

deathhand• 9 years ago

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.

fragsworth• 9 years ago

And then some researcher finds a (probably not causative) correlation between a certain set of genes and pedophilia.

Say you're a politician, and one of your opponents discovers you have the genes. Good luck dealing with that shit

canadian_voter3• 9 years ago

You and I are in this world together and we should help each other as much as possible.

Ah yes, the clarion call of modern capitalism.

Why not just make the data free and open to all?

Knowing more doesn't always lead to better outcomes in a biased system.[1]

[1] https://en.wikipedia.org/wiki/Blind_audition

noir_lord• 9 years ago

Because it slams straight into body autonomy, what is more personal than the building blocks that make you who you are (to a large extent).

I'm a socialist in the old school 'greater good' sense but you have to draw the line somewhere and I think for things like DNA that line should be drawn extremely carefully.

I'm a big advocate of the https://en.wikipedia.org/wiki/Precautionary_principle

cylinder• 9 years ago

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.

pharrington• 9 years ago

According to the article (I haven't checked congress.gov yet), said bill hasn't even passed committee yet. As foul as the proposal is, this isn't indicative of a regression or collapse of the legislative process.

24gttghh• 9 years ago

This [0] WP article says it passed the House Education and the Workforce committee, but the official bill tracking page [1] hasn't been updated yet, and is still being considered by two other committees.

I read the text of HR 1313 [2] and can't actually find the part where it allows penalties described in this article.

The final paragraph seems close, but not quite what is described:

(c) Rule Of Construction.—Nothing in subsection (a)(1)(A) shall be construed to prevent an employer that is offering a wellness program to an employee from requiring such employee, within 45 days from the date the employee first has an opportunity to earn a reward, to request a reasonable alternative standard (or waiver of the otherwise applicable standard). Nothing in subsection (a)(1)(A) shall be construed to prevent an employer from imposing a reasonable time period, based upon all the facts and circumstances, during which the employee must complete the reasonable alternative standard. Such a reasonable alternative standard (or waiver of the otherwise applicable standard) is provided for in section 2705(j)(3)(D) of the Public Health Service Act (42 U.S.C. 300 gg–4(j)(3)(D)) (and any regulations promulgated with respect to such section by the Secretary of Labor, the Secretary of Health and Human Services, or the Secretary of the Treasury).

[0]https://www.washingtonpost.com/news/to-your-health/wp/2017/0...

[1]https://www.congress.gov/bill/115th-congress/house-bill/1313...

[2]https://www.congress.gov/bill/115th-congress/house-bill/1313...

bobcostas552• 9 years ago

What's the downside? If the info was irrelevant then I'd understand it, but obviously genes are relevant to risk. Just as there's nothing wrong with e.g. age-based discrimination, I don't see the problem here.

pstuart3• 9 years ago

No downsides. Please post your complete medical history, financial transactions, porn history here so we can evaluate your fitness for your next job.

McKayDavis• 9 years ago

Just as there's nothing wrong with e.g. age-based discrimination,

Sure there is, are you familiar with the Age Discrimination in Emloyment Act of 1967 [1]?

https://en.m.wikipedia.org/wiki/Age_Discrimination_in_Employ...

jmclnx• 9 years ago

Well I guess if you cannot legally discriminate on a person's looks, they can use this method. Someone said Gattaca, but I think more like syfi's Incorporated

Rich will have designer genes and protected estates, poor will be locked out of any kind social advancement.

no1youknowz• 9 years ago

Already posted:

https://news.ycombinator.com/item?id=13848599

guftagu• 9 years ago

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

ekianjo• 9 years ago

Except that no amount of scrubbing should make you undetectable.

Pxtl3• 9 years ago

The trick was he overwhelmed his real traces with fake ones from Jude Law's character. Vaccuuming out his keyboard and then dumping in somebody else's skin and hair. Traces of the janitor would be reasonable to expect, right?

agumonkey• 9 years ago

Sadly a lot of SF movies are reaching reality, and it doesn't feel that good.

mikeash13• 9 years ago

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• 9 years ago

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.

whatismyip• 9 years ago

Is there a reason why you decided to completely overlook the aspects in the film around discrimination and segregation of the labour force?

barrkel2• 9 years ago

The conflict at the heart of the movie is between the rational vs the emotional. In so far as it makes an argument, it's a weak one; but the core it is in the discussion between the brothers about the race / rescue from the sea. It's rational to curtail ambitions; it's rational to give up if you see no hope of an endeavour succeeding. But Ethan Hawke's character didn't let his rational mental model limit what he could achieve; he tested himself by doing, and found that it was possible, and thus he was able to outswim his brother.

The swimming story is the inner story for the bigger outer story, but that's the heart of it. The bitter cripple who lends his blood points a very harsh light at rational disillusionment. Any system for genetic selection will impose a model of what ought and what ought not be; we should be wary of what it selects for, because it might not be what matters most.

maxerickson5• 9 years ago

It's never shown that he actually has a heart condition.

The character is also clearly not an idiot.

rbanffy• 9 years ago

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

I read the movie as a criticism towards a society that grew accustomed to certainty, to a very narrow notion of physical perfection and the removal of all risk in favor of that. In that sense, the testing depicted in the movie induces society to an error, optimizing for a narrow set of traits, the expectation of fashionable accomplishments, where the explorers are not those who yearn to explore, but those whose genetic makeup makes them best suitable.

rz2k2• 9 years ago

I think it shows that their model had too few features, and was an excellent example of the streetlight effect of genetic testing. Because genetic results are so easy to obtain the signal is readily overweighted by people for decision making.

I would far rather have Ethan Hawke's character as a coast guard swimmer rescuing me in a storm than his brother, even if his brother had no similar heart defect. I would do that because I saw two instances in the movie of him out-performing his brother in feats of swimming endurance when under pressure.

His character is statistically more likely to die on the mission. Just to get a handle on the numbers let's say that with their filtering a 30 year old has about 1/20,000 chance of dying in a given month, and he might have a 1/1000 chance. We haven't seen anything about how he outperformed other candidates, but we can consider the respect of his peers and that he has succeeded in spite of appreciable time spent on establishing an identity and tracking down his DNA.

It probably doesn't matter if he dies on a routine mission. It is the rare mission with an anomaly where someone who is truly exceptional matters. If he is only 20 times more likely to provide the unusual solution that saves the mission, then it is a wash.

Anyway, my point is that one perspective on filling positions is to develop a long list of dis-qualifiers like health forecasts (and minimum competence). That is different than choosing the most extraordinary people possible (where negatives play a role in that determination). I know there is a tendency toward the former when choosing people for very selective and highly sought after roles, but it probably only appropriate when trying to fill out a large headcount with minimal resources for selecting the people. Those who can excel during crunch time are probably far more important for high level positions that are routine but punctuated requirements for extraordinary performance, than the people who look good to a hiring manager playing it safe and relying on clear but potentially less important signals.

fixxer• 9 years ago

Interesting source...

Pxtl3• 9 years ago

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...

Hello71• 9 years ago

not so much that it "should" be as that the Constitution mandates it be

dorfsmay3• 9 years ago

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

Pxtl3• 9 years ago

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.

klenwell2• 9 years ago

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• 9 years ago

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

dorfsmay3• 9 years ago

To help curing the common cold in a specific individual at a specific time, yes.

ChemicalWarfare6• 9 years ago

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.

Asparagirl• 9 years ago

23andMe saved my friend Lara's life. They discovered her BRCA mutation, which led to her getting an MRI rather than a normal mammogram (which she was too young for anyway and which missed the tumor). This caught her cancer in time.

Her blog about it: https://larasgenealogy.blogspot.com/2013/11/how-genealogy-sa...

Irony #1: Stupid and paternalistic laws meant she had to mail in her spit kit from another state, rather than Maryland, where she lives.

Irony #2: She got her diagnosis the day the FDA shut down 23andMe's ability to give people their medical test results.

aplomb2• 9 years ago

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• 9 years ago

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

aplomb2• 9 years ago

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

ta12mar172• 9 years ago

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?

Neliquat• 9 years ago

Conflating a personal matter with something required is inappropriate no matter your tangentally related situation.

ta12mar172• 9 years ago

Your comment is incredibly insensitive and unkind. I sincerely hope that if I were to tell you what happened to our family face-to-face, you would not have responded in this way.

I was assuming that it would be a worthwhile anecdote to share, given that most people appear to find it unnecessary to get tested. If one person on the Internet reads my comment, decides to get tested, and finds they are a carrier of a severe genetic abnormality and avoids delivering a stillborn child, I frankly don't give a shit how "inappropriate" it is.

lisper5• 9 years ago

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.

dredmorbius5• 9 years ago

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...

dredmorbius5• 9 years ago

That same level of testing could be required without requiring an employer's involvement, and all the potential for abuse, discrimination, harassment, and pain that might imply.

You're forcing a false dichotomy. Under colour of sympathy to boot.

I'm sorry for your pain, but your suggestion and justification are both exceedingly poor.

DashRattlesnake2• 9 years ago

I'm sorry for your loss, but as I understanding it, employers are not currently forbidden from offering these genetic tests, they are only forbidden from incentivizing them or penalizing you if you refuse. That's to make sure the disclosure is entirely voluntary.

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.
What are you going to do? Block them from leading a project since they test positive for XYZ Type A?

Not everyone is as nice as you. I can certainly imagine an employer terminating someone who tests "positive for XYZ Type A" because they don't want to pay the costs of treating the disease (though they may have to jump through some hoops to make it look kosher). Healthy employees are cheaper employees.

Also, keep in mind, not every employee is a developer-type that could be "leading a project." Think of all the other kinds of employees: phone reps, janitors, clerks, mechanics, etc. They're already treated as disposable, unlike a high skill developer.

Keverw• 9 years ago

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...

nameisu• 9 years ago

companies can make you sign all kinds of waivers when giving employment. shits fucked up

ChemicalWarfare6• 9 years ago

> 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...

kbenson3• 9 years ago

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.

cmdrfred• 9 years ago

This is more of a liability issue then anything else

If this was true why shouldn't they also test for alcohol use?

gumby• 9 years ago

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.

astrange2• 9 years ago

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?

ghaff2• 9 years ago

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.)

ams6110• 9 years ago

This is my objection. I don't so much object to the notion of insurers considering genetics when evaluating risk, but the demonstrated inability of organizations to keep private personal information private. Once an insurer has your DNA sequence, you must assume that the government also has it, plus any number of criminal organizations.

ChemicalWarfare6• 9 years ago

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• 9 years ago

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

ChemicalWarfare6• 9 years ago

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.

curun1r2• 9 years ago

It's kind the way that credit card companies don't allow you to charge a higher price for credit purchases but do allow businesses to offer a cash discount. So businesses raise their prices and offer that cash discount, effectively charging a higher price to people using credit.

This is the same thing. They can't penalize people for not participating in the Wellness Program. So they increase the employee contribution for everyone and then offer discounts for people who participate. The net effect is to penalize the people that don't participate.

pmorici• 9 years ago

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.

Employees who decline genetic testing could face penalties under proposed bill

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