May 01, 2008
US Congress Passes Legislation Against Genetic Discrimination

Genetic sequences contain information useful for judging people for health risks and potential productivity in different occupations. But the US Congress doesn't want employers or insurers to use the results of genetic tests.

A bill that would prohibit discrimination by health insurers and employers based on the information that people carry in their genes won final approval in Congress on Thursday by an overwhelming vote.

But here's one of the problems with this legislation: People will make decisions about their insurance levels based on genetic test results. So the insurers won't be able to discriminate. But the insurees will discriminate. The ones most likely to get sick will buy more insurance and the ones least likely to get sick will buy less.

The personal use of knowledge about health conditions already influences some people to take jobs which offer better health benefits. Greater knowledge of genetic risk for disease will motivate more higher risk people to apply for jobs at companies with the best health and medical benefits. But knowledge of genetic risks is less a problem for insurance received as a condition of employment. Better paid employees are going to continue to get health insurance as a fringe benefit. Individually purchased health insurance will be more influenced by personal knowledge of genetically based health risks.

Health costs aside, I think there are a lot of legitimate reasons for employers to use genetic profiles in selecting employees and in designing work conditions. For example, people who are less able to break down some toxin due to their liver enzyme genes should avoid work places where exposure to such a toxin is a substantial risk. The toxin might be perfectly safe for people with other variations on liver enzymes.

Another example: night work and internal body clocks. I'm willing to bet that some people will have genetic profiles that allow them to work all night with less stress and wear and tear. Employers ought to select night shift workers based on genetic profiles for body clocks and stress response genes.

We are all potential victims of genetic discrimination? I'm more worried about what my genes will do to me than what insurers or employers might do.

“People know we all have bad genes, and we are all potential victims of genetic discrimination,” said Representative Louise M. Slaughter, Democrat of New York, who first proposed the legislation. The measure passed the House on Thursday by a 414-to-1 vote, and the Senate by 95-to-0 a week earlier.

Instead of totally keeping DNA sequencing info private what I expect this legislation will do in the long run is shift the focus from hiding information that harms one's interests toward revealing information that helps one's interests.

If it turns out you have genes that give you some workplace advantage then you might want to find ways to indicate this information to potential employers. Here's an idea: How about a company that will take a genetic sample from you and sequence it for a fee. As part of the deal you have the option to release part or all of your genetic profile on the web as part of a job seeker site.

Why do this? Well, suppose you have a genetic advantage that makes it easier for you to work in really cold conditions (e.g. on an Alaska North Slope oil rig), really hot conditions, at high altitudes, underwater or at night. Suppose some genes make someone a better pilot. Wouldn't you rather fly with such genetically advantaged pilots at the controls? Or suppose you have genes that give you lots of endurance or ability to handle lots of interruptions. You'd want some way for employers to see your genetic advantages. Governments are going to have a hard time knowing whether some managers checked that web site, perhaps using an internet cafe for anonymity.

Share |      Randall Parker, 2008 May 01 06:05 PM  Bioethics Privacy

Xenophon Hendrix said at May 1, 2008 11:28 PM:

It might be a failure of imagination on my part, but I have trouble seeing how we are going to keep private health insurance once genetic testing becomes widespread. Insurance is based on uncertainty. The less uncertain everyone is, the less workable insurance becomes.

If the insurance companies are allowed to group people by risk, thereby preserving within-group uncertainty, the higher risk groups will have premiums so high that they are uninsurable.

I suspect socialized medicine is in America's future.

Am I missing something?

Jerry Martinson said at May 1, 2008 11:34 PM:

> But here's one of the problems with this legislation: People will make decisions about their insurance levels based on genetic test results.
> So the insurers won't be able to discriminate. But the insurees will discriminate. The ones most likely to get sick will buy more insurance
> and the ones least likely to get sick will buy less.

Boohoo for the man. But seriously, since health insurance is typically bought or selected in year-long increments and many health problems can span a lifetime, the private health insurance market as it exists in the US will predictably be plagued with serious problems of both "moral hazard" of patients with chronic conditions electing better care and also first party bad faith, where insurers will constantly test the legal limits of how much they can get away with post-hoc underwriting. I think there is substantial market failure in the US health care industry. I know people with chronic conditions that have efficacious but expensive treatments that don't want to get diagnosed because they are afraid that it make them unable to get health coverage not only for themselves but for dependents in the future. I can personally attest that health insurance coverage is the major factor that prevents many potential entrepreneurs from taking the necessary business risks that are required to pursue high-tech innovation.

As far as employers using genetic screens - perhaps some day this might work -particularly for screening for medical susceptibility to certain diseases which may be exacerbated by the work environment. However, as far as evaluating whether it might make someone better or worse *qualified*, particularly for tasks that require a lot of skill, I think it will probably always be better to have a screening test composed of evaluating the subjects' technical skill and experience in the relevant area. Theoretically, Lance Armstrong's identical twin could still suck at biking because of other factors such as epigenic effects, uterine environment, childhood and adult environment, free will, and the hand of fate. While genes are important, is genetic determinism so strong that using genetic information will be usefully if one can simply give objective and relavant competency test?

Although I don't know of any laws or cases, it is probably already illegal in the US for employers to discriminate due to genetic factors as it is also illegal (via the Grigg's doctrine) to rely heavily on IQ or proxies for IQ (such as high school diploma or broad aptitude), if it on average adversely affects a disadvantaged group, unless the criteria can be linked to specific job-related tasks.

James Bowery said at May 2, 2008 12:45 AM:

As with all "anti-discrimination" laws imposed on the private sector, this is unconstitutional, unethical and immoral. I say that as someone who has a dependent in-law with Huntington's. I certainly don't begrudge those who take advantage of such laws if passed, but only if they oppose the passage of those laws and support their repeal once passed -- and I similarly support the right of people with Huntington's to have children if they so choose and they are not promoting parasitic laws such as the one just passed.

How bizarre is that?

Ethics -- seems you have to be three-sigma out there to have them nowadays.

Wolf-Dog said at May 2, 2008 11:35 AM:

The movie "Gattaca" was an incredibly well made movie that depicts the hierarchy of humans in the future society, where the DNA test determines who will get the most prestigious job and who will be the janitor. For genetics fans, this movie is obligatory.

K said at May 2, 2008 2:56 PM:

This is probably one of those great government ideas that will have great unintended and unpredicted consequences. As usual our Congress makes others responsible. I agree with Xenophon, it is another toward socialized medicine.

One fact often overlooked is that private health insurance usually has a lifetime limit. Mine is two million $. Unless statutes interfere with those provisions that is the last defense for an insurance company. Since legislators love to tinker I can't be sure how well the limits work in practice.

More liability casue medical insurance providers to reinsure. They can and will hedge their exposure. Of course it all adds to the premiums.

Price control experience might tell us a little about government mandated coverage. When the government limits price the supply ultimately vanishes. Of course mandating insurance isn't a price control per se. It is more of a price equalization which allows high risks to afford coverage.

Tom said at May 3, 2008 12:55 PM:

"People will make decisions about their insurance levels based on genetic test results. So the insurers won't be able to discriminate. But the insurees will discriminate."

Yeah, kind of like my wife and I went for the gold plated health care this year, because we planned to have another child. We went into the insurance KNOWING that we were going to get a heck of a lot more out of it than we put in. After the kid is 2 or so, we'll revert to the cheaper one with lower coverage.

M said at May 3, 2008 3:04 PM:

The ability to privately get personal genomic data seems like a good step forward, but could have unintended implications

On the plus side: if everyone knows their genetic pre-disposition diseases could be prevented much sooner, research could advance more quickly to provide gentic treatments or cures

For parentals: sperm & egg donors could be classified by their genetic makeup & pre-matal genetic tests could be used by parents to 'discriminate' against children they'd rather not have (as has already been done for gender selection for quite sometime) resulting in some skewing of human population genetics towards what we percieve to be 'good' genetics [this could have unintended consequences as many genes thought to be 'bad' are adaptations to conditions that re not apparent to us, like Sickle Cell Disease, is 'bad' unless there's a malaria epidemic & then it can keep you alive]

For the insurance industry: this is likely more good than bad, the increased knowledge of one's genes would decrease percieved risk and could thus decrease aggregate demand for insurance, but the improved prevention of disorders could decrease actual risk to such an extent that insurance companies may be able to significantly reduce rates for nominal coverage plans & so meet the decreasd demand with a more varied product line. As injury would still be uncertain, insurance groups could offer more detailed coverage of accidents to make up for possible revenue short-falls in blanket-medical plans [the insurance companies have probably reached a simmilar conclusion & thus not lobbied against this legislation, since it's unlikely that near unanimous support could be garnered for legislation, if influential industries opposed it -although, the US Federal government has not had a very good record of safe guarding citizen data & that may also be why industry has no problem with the bill -once the bill passes, they may hope people will stop using aliases & paying cash out of town to get their genetic profiles & then the government & customer demographic corporations will have the populations' genomic data that industries can then use to make decisions surrupticiously -like they tell the applicant that they're turned down for some other technicality, but the actual hidden reason is their genetic predisposition to certian disorders ]

. Previous History: In the 1970s, several insurers denied coverage to blacks who carried the gene for sickle cell anemia. The Lawrence Berkeley National Laboratory in California secretly tested workers for sickle cell trait and other genetic disorders from the 1960s through 1993; workers were told it was routine cholesterol screening. A 2001 study by the American Management Association showed that nearly two-thirds of major U.S. companies require medical examinations of new hires. Fourteen percent conduct tests for susceptibility to workplace hazards, 3 percent for breast and colon cancer, and 1 percent for sickle cell anemia, while 20 percent collect information about family medical history. Burlington Northern and Santa Fe Railway Co. paid 36 employees $2.2 million in 2002 to settle a lawsuit in which the workers claimed the company sought to genetically test them without their knowledge after they had submitted work-related injury claims.

For employers: they already aren't supposed to discriminate based on medical conditions ; for instance they aren't supposed to turn down applicants for stressful positions because they have or may get heart-disease [most stock brokers would never get their jobs if such discrimination was considered legal & reasonable] - most employers seem to know that motivation is usually more important that innate skill [Cisero, one of the finest speakers in Roman History, stuttered ; Beethoven composed some of his greatest works after going completely deaf ; several people became athletes after losing limbs see: ]

For Employees: they may self-select less risky occupations for their genetic make-up, like if you knew you had diabetes you may not want to work in a candy factory [this could decrease the overall creative endeavors of Humanity as only those suited to a task attempt it - for instance Beethoven may have avoided music if he knew he'd likely go deaf, although maybe knowing his weakness could lead to early treatment & prevention of his going deaf, but would his final compositions have come out as well if had not gone deaf?], - hopefully they'll also elect to prevent the diseases they're predisposed to get, like conciously eating less calories & exercising more, if you're predisposed to obesity from a low metabolism

For Humanity Overall: like most technological advances personal genetic profiles will likely improve health & standard of living while making Humanity progressivly less tolerant of adversity [basically the technology helps us adapt & thus leaves us less innately adaptable, like air-conditioning was a luxury before & now seems to have become a need ] , also this would likely decrease genetic variability, unlike most assistive technologies that widen genetic diversity by allowing previously unviable individuals to survive with assistance [like glasses assist people that may have suffered an early demise by accidents of visual impairment] -this could have profound unintended adverse implications on the viability of future generations - hopefully we'll understand more about how to 'undo' our genetic selections before wide adoption of genetic profiling paints us into a corner

M. Simon said at May 4, 2008 5:37 AM:

Here is one for you:

Addiction Is A Genetic Disease

What will the Bill do to the Drug War?

Jason Malloy said at May 5, 2008 6:35 PM:

"For genetics fans, this movie is obligatory."

Everyone seems to take the wrong message from the movie Gattaca... including the people who made it!

The one exception is philosopher Neven Sesardic, who correctly reasoned that Ethan Hawke was the villain of Gattaca, not the hero:

Nick G said at May 6, 2008 11:53 AM:

Why do we cheer for Hawke? Because we object to an authority coercing such decisions.

As you note, endangering crewmates in space is a bad idea, and makes this a special case.

AI said at May 31, 2008 10:21 AM:

Xenophon is right on the failure of imagination my friend.

The whole concept of insurance relies upon uncertainty. If you remove the component of uncertainty, such as this genetic screening promises to do in the case of long term health, you remove the need for risk pooling via insurance. Insurance companies are esentially taking a bet that an insurees' medical bills will not exceed his/her premiums over the long term. When applied over a large group of individuals, this bet will pay off more often than not

If uncertainty is removed, and everything is deterministic, insurers will no longer be making bets. They will simply be charging you in advance for the medical bills you are promising to accrue in the future. At this point, why would you need insurance anyway? The consumer of medical services would simply pay the bill outright, out of his/her own pocket, since he/she knows their medical fate.

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