Genetic discrimination, genetic privacy: rethinking employee protections for a brave new workplace.

I. INTRODUCTION On June 26, 2000, scientists made the stunning announcement that they had completed a rough draft of the human genome, mapping 97% of the roughly three billion "letters" composing human DNA, and had done so several years in advance of the anticipated completion date of the Human Genome Project (HGP).1 Politicians and scientists heralded the achievements in grandiose terms. President Clinton declared, "Today we are learning the language in which God created life."2 Dr. Francis S. Collins, who directs the publicly funded efforts to map the human genome said, "[W]e have caught the first glimpse of our own instruction book, previously known only to God."3 But a number of cautionary notes accompanied the celebratory pronouncements. On the one hand, experts warned, a great deal more work remains before the decoded DNA letters yield effective, widely available medical benefits. On the other hand, as scientists leading the decoding efforts underscored, the possibilities for reading, using, and manipulating human genetic material raise a host of ethical and legal challenges. One challenge emphasized by the scientists involved in decoding the human genome is the potential misuse of genetic information, which the new technologies will make available. As Dr. Collins stated: "The challenge, and it is a formidable one, is to nurture scientific exploration, encourage the translation of these new discoveries into life saving medicines, and to put in place public policies reflective of our core American values that prevent the unjust, unfair, and discriminatory use of genetic information."4 Similarly, Dr. Craig Venter, president of Celera Genomics, the HGP's private counterpart, warned of the "immediate threat . . . [of] genetic discrimination."5 In the employment context, the potential use of genetic information to make hiring, firing, and other personnel decisions raises the most concern. These concerns came to life in February 2001, when the Equal Employment Opportunity Commission (EEOC) brought its first court action challenging genetic testing by an employer.6 The suit against Burlington Northern Santa Fe Railway Company sought to end a practice of requiring workers with carpal tunnel syndrome to submit to genetic testing to determine whether they had a genetic predisposition to the condition. Although the Railroad announced a few days later that it would cease genetic testing, concerns over the possibility of genetic discrimination in employment persist.7 Concerned about genetic discrimination in employment, advocates are calling for a legal response modeled on the civil rights laws that currently prohibit race, sex, age, and disability discrimination in the workplace. Some argue that the Americans with Disabilities Act8 (ADA) should be interpreted, or, if necessary, amended, to prohibit employers from discriminating on the basis of genetic anomalies that do not currently produce any illness or impairment.9 Others advocate the passage of legislation modeled on existing civil rights laws to prohibit genetic discrimination in employment.10 A number of states banned discrimination by employers on the basis of genetic characteristics.11 President Clinton issued an Executive Order prohibiting genetic discrimination against federal employees,12 and federal legislation has been proposed that would offer such protections to private employees on a national level.13 Those advocating such legal prohibitions frequently invoke the rhetoric of the civil rights movement. For example, Senator Edward M. Kennedy, a cosponsor of the proposed federal legislation, said, "Discrimination on the basis of a person's genetic traits . . . is as unacceptable as discrimination on the basis of gender, race, or religion."14 Similarly, EEOC Commissioner Paul Steven Miller argues: Employment civil rights laws are rooted in the principle that certain characteristics such as race, national origin, gender, religion, age or disability may not be considered in making employment decisions because they are ultimately irrelevant to the person's ability to perform the job in question. …