Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a true, but anonymized, patient care case, and then we provide an expert's commentary.
Last week, you voted on whether an employer should be permitted to genetically test prospective employees.
Should our society permit the employer to require genetic testing?
Yes: 7%
No: 93%
And now, bioethicist Jacob M. Appel, MD, JD, weighs in:
Congress passed the Genetic Information Nondiscrimination Act of 2008 (GINA) with bipartisan backing. Both President Bill Clinton and President George W. Bush had advocated for the bill, and it passed the Senate 95-0 and the House of Representatives 414-1, with only libertarian congressman Ron Paul dissenting.
The legislation bans discrimination in employment and health insurance on the basis of one's genetics. (Notably, however, life insurance and disability insurance are not covered, leaving an ongoing deterrent to genetic testing.) The purpose of the law was to combat "genoism," a term coined by "Gattaca" film director Andrew Niccol to describe discrimination against a person based on their genetic resume.
While employers can test for a condition likely to cause current harm, they cannot test for future risks. So a bus company would be allowed to test drivers for a gene mutation likely to cause sudden heart attacks or seizures on the job at present, but not a mutation expected to cause blindness down the road.
Advocates of the law compare genetic discrimination to racial prejudice. Critics are quick to slam this analogy. Andrew Sullivan in 2000 wrote in the New York Times: "The point of laws against racial bias is to outlaw irrational discrimination based on irrelevant characteristics. The point of laws against genetic discrimination is to outlaw rational bias based on relevant information." While Sullivan conceded that such genetic data is "speculative," he argued that it was speculative in the same way that SAT scores are speculative: some low performers may succeed in college, but that does not mean the tests do not have some predictive value. Similarly, then, Irwin's plan to hire only employees who test negative for lung cancer markers on chromosome 15 could be considered perfectly rational, whether or not it is just.
Allowing discrimination based upon genetic risks that may display themselves in the future strikes many people as unfair, but is it really so much more unfair than discriminating against traits that already display themselves? For example, nobody would expect Greyhound to hire a blind bus driver. So why expect the company to hire a bus driver who has a genetic condition that makes them 99% more likely to go blind within 5 years? The company would squander resources training an employee who would not be able to work in the near future, while that employee would lose an opportunity to learn a trade they could continue to perform after the blindness sets in.
More concern exists, however, for prospective employees who have conditions likely to prevent employment anywhere. One can easily imagine a situation where companies outside the tobacco industry also refuse to hire workers positive for the lung cancer markers on chromosome 15. The law offers blanket protections against employment discrimination for such genetically unlucky individuals.
How to permit rational genetic discrimination without closing off meaningful opportunities for those who have lost the so-called genetic lottery remains an unresolved ethical dilemma.
Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at the Icahn School of Medicine at Mount Sinai in New York City. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College.
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