October 19, 2005

posted by Daniel J. Solove

Great article, just a small point about risk-taking: HIV testing is offered anonymously because there was (and is) a substantial group of people who won't get tested if they have to give their name. Epstein may say think that its "hard to believe that workers would take that kind of risk with their own lives," but there's emperical evidence that people make precisely those choices.

I don't think you have to look as far as soldiers, police, and fire fighters to find people willing to risk their health for jobs. Life looks a lot different with the job security of tenure.

Say you're unemployed ("downsized") and you've got a choice to get a genetic profile. Also, assume that if anything on a certain list of propensities shows up you're likely not going to get hired to any well-paying job. Also, if any of those conditions show up you can modify your behavior somewhat to improve your odds in the long run, though the propensity will still get you rejected from jobs. Now you've got a choice: maybe possibly not doing certain unusual things that would slightly improve your long-term prospects for health(everyone has benefits to eating well and exercizing, so that doesn't count), or very likely not being able to make ends meet. No matter how inclined your body may be towards melanoma decades in the future, starvation and exposure will kill you now.

From a public health standpoint, then, how do we remove the penalties associated with behaviors we want to encourage? Limits (if not IBM-style outright bans) on what genetic information is and is not a rational basis for disqualifying an applicant.

Your point about genetic information representing a mere predisposition is conclusive, or close to it, I think.

We recognize, in this society, a fundamental injustice in permitting individuals to be injured based on statistical patterns absent extreme need. That's why we don't ordinarily permit racial profiling. Similarly, we don't permit employers to discriminate against disabled people on the basis of their diagnosis alone, even when that diagnosis could impair them from doing the work, without an individualized assessment.

(In fact, considering employment law generally, Epstein's argument proves far too much: an old person is statistically more likely to die sooner than a younger person, yet we forbid employers from discriminating on the basis of advanced age...)

This is also, I think, why many people experience the insurance industry as crooked and/or unjust (and particularly the compulsory auto insurance industry, whereby the state requires me, in order to drive, to do business with people who think that I'm less responsible because I'm male and not married, and charge accordingly). And why they have some justified skepticism about IQ tests. Etc. etc.

Cf. just about everything written by my beloved Foucault, also Neil Postman's "Technopoly," and dozens of other works of cultural critique...

If we were to speak purely rationally about risks and costs associated with them, then companies would be allowed to discriminate against handicapped employees because the cost of accessibility is not negligible.

So - having mostly agreed that our society occasionally does things not based purely on the bottom line, I think it is fair to say that we can, as a society, not choose to discriminate against genetic information. If we started, it would very quickly become a very steep, very slippery slope.

I'm not well versed in employment law, but there seems to be some inconsistency in Epstien's position. If genetic testing was used for employment decisions, does that mean an employeer could discriminate against someone with a genetic probability of contracting a disease, but not against someone who already *has* that disease?

If a genetic predisposition for a disease kept you from working, does that mean you qualify for Disability?

HeScreams,

I believe, though I don't want to speak for Epstein, that he would say that employers should be allowed to discriminate against both people with genetic predispositions and people who actually have the disease. This is his normative position, as the law currently puts some restrictions on the extent to which employers are allowed to discriminate based on health conditions. In fact, Epstein takes issue with anti-discrimination law more generally as it applies to private sector employers:

I published my book Forbidden Grounds in 1992. There I took the position that current anti discrimination laws should be repealed insofar as they apply to private competitive employment markets. I relied on my libertarian bent to explain why a system of free entry and open markets can better cope with invidious forms of discrimination in employment markets than any system of government mandated and enforced norms. Prejudice in markets is always costly to the parties who practice it, so that there is a strong corrective against unthinking prejudice that works without the heavy administrative costs and logrolling mentality that often infect the political decision making process.

Richard A. Epstein, The Legal Regulation of Genetic Discrimination: Old Responses to New Technology, 74 B.U. L. Rev. 1 (1994).

I think you raise great counter arguments to Prof. Epstein's position, but I think that with respect to employment and health concerns, the traditional economists "rational person" is fundamentally flawed.

Because genetic testing is linked to health issues and in the U.S., at least, health insurance is typically tied to employment, the two issues cannot really be separated.

Take, for example, the issue of a genetic test for breast cancer. Of course a "rational person" might want to know that they are at risk--to take advantage of the prophylactic measures Epstein advocates. But what if the employer doesn't want to take on an employee because of the impact on the costs of health care to someone who could potentially get a costly disease?

The employee risks the very employment that provides them with the health care they are dependent on for the treatment of their (potential) illness. This is hardly a set of circumstances conducive to rational decision making.

There is nothing fraudulent or misleading about wanting to keep information that is not detectable without modern technology private. I'm sure a financial audit of every potential job applicant would reveal information that might be valuable to employers as well (such as a propensity for embezzlement) but we don't necessarily allow or advocate that for all potential employees.

Note: I agree with Epstein.

"Privacy certainly isn’t free – it comes at a cost, but that cost might well be worth paying."
Yes, I agree. But why should society bear the cost? Why not have each individual decide whether to bear that cost? Each woman may decide how much information to release in return for a chance at a greater salary and greater benefits. If genetic discrimination were allowed, you would agree that a fair share of people would resist having their genes examined. Employers could capitalize on this group by hiring them at wages commensurate with their increased risks and lessened productivity and the like. The drastic scenarios imagined, specifically no job prospects for those refusing examination, relies on the fallacious assumption of a monopolistic employment market. Epstein rejects these notions in his Simple Rules.

"We recognize, in this society..." The fact that the laws effectively prohibit Epstein's preferences for uninhibited rational discrimination does not constitute a valid argument. Our society as you say is liable to be manipulated by every whim. Epstein's philosophy may fly in the face of decades of legislation, but, in my mind at least, that does nothing to discredit it.
"I'm less responsible because I'm male and not married" That is the statistical reality. If not, insurance companies would reject those tools, and continue to seek worthy ones. If males are more predisposed to crime than females, does concern for safety not demand that one focus more attention on males (as that would yield more arrests than say eyeing men and women equally)? Yes, this opens the door to racial profiling et al. But that does nothing to weaken Epstein's position; It just intensifies (and renders even more controversial) the question.

Dave!- I do not know the laws regarding it, but the optimal situation would be where there is no law mandating that employers provide health insurance. The sick man in your analogy would negotiate with the employer, and forgo health insurance, and/or his wages to bring the total cost of employ roughly equivalent to a similarly productive prospective hire, theoretically speaking of course. If the law mandated that employers provide health insurance, your sick man may find himself unemployed, or stuck with a salary less than what he would have obtained without the law.

The only problem I see, is the issue of adverse selection in the case of nondisclosure. There would be a disparity between the wages of disclosed and nondisclosed people. Some of the nondisclosers would realize it in their pecuniary interest to disclose, raising the disparity for the remaining nondisclosers, akin to the adverse selection problems in health insurance (and college loans based on a percentage of future pay). But I would expect a (non-legal) solution to arise to remediate this problem.

UC undergrad: the things "we recognize, in this society" have more to do with our moral intuituions than with "decades of legislation." I suggest that permitting the imposition of injury on certain individual members of society on the basis of "statistical reality" is inconsistent with those intuitions because it creates individual injustice as the price for social efficiency. Because the institutions (insurers, states, employers, etc.) are unwilling to incur the costs of engaging in an individualized assessment of the various risks that their employees present, they accept a higher rate of errors, but fail to internalize the cost of those errors. Those errors are instead suffered by the perfectly good unmarried male drivers, the perfectly law-abiding black males, the perfectly healthy fat people, etc.

If we really look at it closely, it's a distributive question. The institutions making these decisions save investigative costs by imposing a risk of wrongful non-selection on their employees, customers, citizens, etc. How is this just?

Two types of genetic testing can occur in the workplace: genetic screening and genetic monitoring. Genetic screening examines the genetic makeup of employees or job applicants for specific inherited characteristics. It may be used to detect general heritable conditions that are not associated with workplace exposures in employees or applicants. For example, employers used genetic screening in the early 1970s to identify African Americans who carried a gene mutation for sickle cell anemia. Those carrying the gene mutation were denied jobs-even though many of them were healthy and would never develop the disease. In these cases, genetic screening to identify the sickle cell trait often occurred without the consent of the individuals.


In addition, some employers may seek to use genetic tests to discriminate against workers - even those who have not yet or who may never show signs of disease-because the employers fear the cost consequences. Based on genetic information, employers may try to avoid hiring workers who they believe are likely to take sick leave, resign, or retire early for health reasons (creating extra costs in recruiting and training new staff), file for workers' compensation, or use health care benefits excessively. A 1989 survey of large businesses, private utilities, and labor unions found that 5 percent of the 330 organizations responding conducted genetic screening or monitoring of its workers. Another 1989 survey of 400 firms, conducted by Northwestern National Life Insurance, found that 15 percent of the companies planned, by the year 2000, to check the genetic status of prospective employees and their dependents before making employment offers. Thus, there is evidence that genetic information continues to be used to discriminate against qualified workers. The economic incentive to discriminate based on genetic information is likely to increase as genetic research advances and the costs of genetic testing decrease. Arizona PEO

Questioning whether employers should or should not be allowed to use genetic testing to screen potential employees is another step down a disastrous path for businesses and health policy. The important question is not whether genetic testing allows increased efficiency in the market. It is how we have gotten to the point where businesses are so willing to pervert their hiring practices that they will use a criterium highly irrelevant to job performance to screen employees.