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Genetic Privacy

This week, IBM announced that it would not use genetic information in making any employment decision:

On October 10, IBM Chairman Sam Palmisano signed a revision of the company’s equal opportunity policy specifying that IBM would not “use genetic information in its employment decisions.” In doing so, Big Blue became the first major corporation to proactively take this position. “Business activities such as hiring, promotion and compensation of employees will be conducted without regard to a person’s genetics,” wrote Palmisano in a letter to employees announcing the change.

In contrast, consider the story of Eddie Curry, an NBA basketball player. Curry was with the Chicago Bulls, but he had two incidents of heart arrhythmia. General Manager John Paxson decided to bench Curry for the rest of the season. Paxson wanted Curry to undergo a genetic test to further diagnose his heart condition, but Curry refused. According to this CNN-Sports Illustrated article:

Medical experts told Paxson that Curry needed to undergo a DNA test to show whether or not he was predisposed to hypertrophic cardiomyopathy, the same heart disease that was linked to the tragic deaths of Reggie Lewis and Hank Gathers while they were playing basketball. . . .

Paxson could not bear the responsibility of permitting Curry to play so long as there was the slightest doubt that playing the game could end his life. Paxson says that he and Bulls owner Jerry Reinsdorf were in full agreement on this issue: A DNA test showing that Curry was predisposed to a fatal disease, in concert with the two episodes of last season, would have been enough to prohibit Curry from playing for the Bulls again. . . .

Paxson ultimately made two contract offers to Curry, a restricted free agent. But both offers were contingent on him taking the DNA exam. If he passed the test, he would receive $32 million over four years. If the test indicated that Curry was predisposed to a potentially fatal heart condition, the Bulls promised him an annuity that would pay Curry $400,000 annually for 50 years — a total of $20 million for someone who wouldn’t be playing.

Curry declined to take the test, fearing that a positive result could lead to him being unable to play anywhere in the NBA. He was eventually traded to the New York Knicks.

The Curry situation reveals one of the reasons why genetic testing should remain confidential — people might be deterred from getting the test if they know it can be used against them in employment decisions. And shouldn’t it be up to Curry himself to make the decision about whether to risk his health? It’s his life, after all.

On the other hand, Curry’s condition has effects on his employer and his team. If Curry were to drop dead on the basketball court, the Chicago Bulls’ management might come under great criticism. It would have an effect on the fans and on the entire team. It is certainly an incident that the Bulls’ management would want to avoid.

Richard Epstein (law, Chicago) believes that allowing people to conceal the results of genetic testing from their employers is tantamount to allowing them to engage in fraud:

False statements about or deliberate concealment of genetic information is as much a fraud as false statements about or concealment of any other issue.

Epstein argues that employers bear a big burden when they hire a person with a genetic disorder. If that person knows about it, he or she is unfairly concealing material information from the employer. Richard A. Epstein, The Legal Regulation of Genetic Discrimination: Old Responses to New Technology, 74 B.U. L. Rev. 1 (1994).

Paul Schwartz (law, Brooklyn) makes the apt point that employers often discriminate against people based on misunderstandings about certain health conditions. And people might not seek out the appropriate health care because of the fear of the consequences. Paul M. Schwartz, Privacy and the Economics of Health Care Information,76 Tex. L. Rev. 1 (1997).

The difficulty, in many situations, is that it is rational for employers to discriminate against people with genetic conditions. If Curry does indeed have a heart condition or is genetically predisposed to developing one, it might be rational for the Bulls’ management not to want to play him.

Pauline Kim (law, Washington U.) argues that there are good reasons why we should prevent employer use of genetic data even when employers are acting rationally in using it. Specifically, she contends, work is “more than merely an income stream; it is closely tied to identity, status and community.” Pauline T. Kim, Genetic Discrimination, Genetic Privacy: Rethinking Employee Protections for a Brave New Workplace, 96 Nw. U. L. Rev. 1497 (2002). The importance of work in people’s lives is a strong enough societal value that it should trump the extra benefits employers might get in using genetic information.

Kim’s observations help explain Curry’s decision to risk his life and compromise his health care in order to be able to continue his job. Curry made this decision despite being offered a lucrative package by the Bulls even if his genetic tests came out against him.

These issues are powerfully illustrated by the movie Gattaca, which depicts a society that openly engages in genetic discrimination. The main character, Vincent, is born with a genetic predisposition to develop a heart defect. He is thus deemed unfit for most jobs, and he cannot pursue his dreams of being an astronaut. He therefore assumes the identity of another person to pursue his dream. The movie shows a world in which people’s possibilities are constrained, where they are locked out of their dreams by being permanently marked as genetically defective. It is certainly understandable why Eddie Curry wouldn’t want this fate. And IBM is to be greatly commended for setting up a policy where its employees will never be put in the difficult position Curry was placed in.

UPDATE: There is an interesting discussion of the Eddie Curry incident from last week over at PrawfsBlawg in a post by Matt Bodie.

Originally posted at Concurring Opinions

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This post was authored by Professor Daniel J. Solove, who through TeachPrivacy develops computer-based privacy training, data security training, HIPAA training, and many other forms of awareness training on privacy and security topics. Professor Solove also posts at his blog at LinkedIn. His blog has more than 1 million followers.

Professor Solove is the organizer, along with Paul Schwartz, of the Privacy + Security Forum and International Privacy + Security Forum, annual events designed for seasoned professionals.

If you are interested in privacy and data security issues, there are many great ways Professor Solove can help you stay informed:
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