TCS Daily


Gene Genie, Out of the Bottle

By Matt Bandyk - March 20, 2007 12:00 AM

Scientists predict a future in which genetic testing can foretell a person's susceptibility to hundreds of medical conditions. It's a brave new world, and Congress just can't wait to regulate it.

This week the House will debate a bill sponsored by 181 congressmen from both parties that would ban employers and insurers from committing activities dubbed "genetic discrimination." President Bush recently called for this type of legislation in a speech before the National Institutes of Health.

Despite the bill's bipartisan support, the thinking behind this sweeping legislation is twice mistaken: it overestimates the dangers posed by genetic information, and underestimates the harmful unintended consequences a ban will generate.

The bill would prohibit employers from using genetic information about an employee's predispositions for certain medical conditions when making hiring, firing or job placement decisions. The bill's proponents paint fears about a world in which genetic risks for certain medical condition will lock people out of jobs. A world where your uncontrollable physical characteristics can keep you out of certain jobs sounds scary. But that is until you realize that we've always lived in that world. You won't find people the size of hobbits in the NBA, and you won't find people with below average IQs as Ivy League college professors (OK, OK, well, not many).

Do we consider these everyday hiring decisions to "violate our country's belief in equal treatment and individual merit," as President Bush has said of genetic discrimination? It is not at all clear why genetic predispositions are any different from all the other characteristics that employers already do—and should—consider.

Also, consider the ways in which use of such information would be beneficial. Employers could use genetic test results to assign certain workers to different positions where they will not be exposed to certain risks. Brush Wellman, a company that manufactures products containing the chemical beryllium, has provided genetic tests for its employees to determine if they possess a genetic variation that can cause someone to develop an incurable and sometimes fatal lung disorder when exposed to beryllium. It seems obvious that employers should be able to know which of their workers they might be unwittingly exposing to danger, and reassign or fire them accordingly. But the bill's sweeping restrictions on job placement decisions may discourage companies from trying to use genetic information in these beneficial ways.

The genetic discrimination ban would prohibit health insurers from using genetic information to set premiums. Insurers are always looking for more information about their customers in order to combat adverse selection . In insurance markets, the term "adverse selection" describes when high risk individuals receive insurance coverage at premium levels that don't reflect their risk. As genetic testing becomes more accurate about predispositions for disease, insurance companies will try to find out which customers have these proclivities, so they can offer higher premiums. The concern is that people with genetic predispositions for life-threatening disease will be unable to obtain insurance.

But no one is perfect when it comes to genetics—each of us has variations that make us predisposed to at least some conditions. The logical role for policymakers is to deal with the very specific group of people for whom insurance could become unaffordable due to especially high premiums.

But that's not what the bill currently before Congress does. By denying insurers ability to gauge risk, it guarantees adverse selection.

A 2005 study in Health Affairs looked at 148 adult children of Alzheimer's patients who participated in a genetic testing trial and how the results of the tests affected their decisions about their health insurance. The study found that the subjects whose tests showed a high risk for Alzheimer's were more likely to buy long-term care insurance, and thus concluded that genetic testing for Alzheimer's could create a "perfect storm" for adverse selection. If Congress puts them in the dark by restricting genetic information, insurers would raise premiums across the board in order to cover the losses they would incur from these high-risk people buying greater coverage. Low risk customers, realizing that they are subsidizing others, would either settle for plans with less coverage or drop out completely.

The ban on genetic discrimination, then, is a "fix" to health insurance problems much like amputating your foot is a "fix" to your stubbed toe.

Another fear cited by supporters is that free flows of genetic information will have a chilling effect on genetic testing. Rep. Louise Slaughter (D-NY) is one of the bill's cosponsors. She testified before the House Subcommittee that "ongoing genetic discrimination is making men and women ever less likely to be tested and to participate in clinical trials" because people will fear that the results of these tests will be used against them. We certainly need testing to unlock medical benefits. But again the proposed law overreaches. The appropriate response to privacy concerns is for researchers to assure potential test subjects that their information will not be sold or distributed. That hardly requires interfering with employers or insurers.

Supporters of the ban fear that the free use of genetic information by businesses will force some Americans into an underclass of DNA untouchables. Many science fiction stories like Gattaca and Brave New World are sympathetic to this argument. But sci-fi does not make for good policy. In the real world, Congress will do more harm than good if it restricts genetic information.


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9 Comments

A Positive Test
What if a genetic test provided positive information? I mean, what if the test identified individuals likely to stick with the job? In that event, employee turnover would decrease. Society would benefit from the result. Efficiency would improve.

A perfect illustration of the case for single payer
Adverse selection is in fact the looming problem for the present system. Now many people with 'pre-existing conditions' can't get health insurance at any cost unless they are part of a company or other large institution.

Genetic testing will be greatly widening the pre-existing condition field.
One way to deal with this fairly is some kind of system that accepts all, and that all have to be part of.

this is obviously anathema to the libertarians here. Perhaps they can suggest an alternative that won't condemn people who happen to have a genetic vulnerabilty to insuranceless bankruptcy.

Yup that Gatica!
Have you seen the movie?

Whats the big deal?
A close friend is a Director of HR and a Liberal. She told me this, "Hooters has every right to hire women with big breasts and flat tummies. It is a requirement of the job."

I am an IT guy, ADHD should be a requirement.... :-)

what if
they found out through genetic testing that you have a predisposition to say, develop ALS, or MS, or any other completely debilitating (and costly) disease - does the company then have the right to fire/not hire you? or are we just going to make sure we do this testing before the child is born so that we don't have those types of people to worry about?

yes, some genetic predispositions are aptly applied to job performance, say intelligence, or breast size in your example, but there needs to be some limitation - unless you just want to say, oh poor guy looks like he's going to develop X and that'll cost too much for the company so, hey buddy, go rot. that kind of thing happens enough with the rules we've got in place, businesses don't need more tools to screw the worker.

We could test every child.
Yes wouldn't be great, we could test their genetics and tailor their whole lives. What's the point of wasting education on the dumb or someone who won't live long. We could concentrate our resources on people who fit the bill and let the "other" do the work that they are suitable for.

Health care is too expensive...
This is yet another example of the disfuctional nightmare that health care has become because we have regulated it way too much and driven costs out of reach so that everyone needs health insurance. And this is only making the insurance industry wealthy. Now comes Medicare as an entitlement and those numbers extrapolate into the "Program That Ate America". Whoopes!

We need to reform the FDA so that the cost to bring drugs and medical devices to market drops down to R&D expenses for a company just like any other high tech product. Cut human trials to the bone, watch outcomes as the product rolls out and be ruthless about pulling a product off the market when side effects are hurting people. The FDA can keep itself plenty busy this way. Its current clinical study discipline often fails to detect problems that show up with larger sample sizes after product release anyway.

We need to open more Medical Schools and train lots more registered nurses.

Medicine is inherently dangerous. Automobiles are inherently dangerous. We accept such risks because otherwise we cannot live our lives.

Trying to keep people safe from the charlatans who would sell us bad medicine is a noble intention for the government but the outcome is an industy without adequate competition that is (by its nature) an extortionist. Life and death are hard to price. The industry has an artificially limited supply yet enjoys infinite demand. The companies naturally price at "what the market will bear". And that process has been snowballing out of control for decades.

And it is not just one industry that is laughing all the way to the bank. It is Ethical Pharmaceuticals, the Medical Profession, the University Medical Schools, the Hospital Industry, the Insurance Companies and ultimately the Federal Government itself that has been (up to now) funding its other programs with the surpluses generated by (Social Security and) Medicare taxes.

Now comes genetic testing to give people fair warning regarding their own bodies but which would be a bad thing because the combined Health Care industries, with all of their wealth would, nevertheless, deny state-of-the-art medications and procedures to those who need them the most.

But the government is bound to provide "live, liberty, health and property"...that's the deal. It follows that the government must now correct this situation (that is, indeed, of its own making).

They should start with the FDA and let market competiton do the rest. The State Universities should open more Medical Schools, Nursing Schools and aggressively underwrite all such training. Lots of fine students who would make great doctors cannot get into medical school. Simply not enough spaces. This keeps physicians rare, overworked and overpaid. And we are draining as many nurses as possible out of the rest of the world to staff our American hospitals.

Lemuel, I want that single payer to be me. I bought my own automobile. I should be able to hire my own doctor and pay for my own medicine. And so should you.


All the factors you mention may add 10 percent to the total
But not much more. Right now, medical care is nearly 20 percent of GDP. That's not going to be cut in half, or even by 25 percent, by even drastic measures to cut back on consumer protection.

> I should be able to hire my own doctor and pay for my own medicine. And so should you.

Anyone with a million dollars in cash has no trouble, anywhere. And people cut off from insurance (for pre-existing conditions, for example) try to pay here. Check bankruptcy filings for what happenes if they're a little short, or don't have enough home equity.

Welcome to the machine
Well, that's a very unconvincing article.


The author uses the stupid example of midgets being denied jobs in the NBA - ridiculous. But there's no doubt in my mind that insurance companies with detailed genetic information would use that info to deny coverage for a wide variety of pre-existing conditions - except then it would be denied because of a "pre-existing disposition". See how easy that was?


Then, after they have combed through your genetic profile, adjusting and denying all along the way, the next step for these "Insurers {who} are always looking for more information about their customers" will be to require your grocery store records, too.


After all, if you drink more than 3 Pepsis a week, you'll be predisposed to diabetes. And of course, if you eat beef more than once a week, you'll be predisposed to coronary trouble.


Also, if you buy TV Guide every week, you'll be downgraded for your sedentary lifestyle. Or maybe that'll be cross-listed as a mental health factor, too. Because if you watch that much TV, then you'll be predisposed to be overemotional, or you'll probably be oversensitive to sunlight, etc etc ad nauseam.


I bet they could get some useful info from my phone and internet bills, too eh? and all my credit card statements might help the nice insurers take care of me better, too.


I, for one, welcome our new insurance overlords, and gladly submit all the circumstances and transactions in my private life to their warm, loving, tender scrutinies.

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